VOLUME 12 | ISSUE 3
The Battle Within Caring for Those with Dementia Hospital2Home: Dementia Capable Care Transitions– Better Care and Better Outcomes By Jeffrey B. Klein, MBA, FACHE
What Primary Care Physicians Need to Know About Dementia By Nicole Sestito, PhD, ABPP/CN, Lisa Bodenheimer, LCSW, and Christian P. White, DO
Alzheimer’s: Ethical Questions and Answers from Diagnosis to Dying By Stephen G. Post, PhD
A JOURNAL FOR THE HEALTHCARE COMMUNITY Published by MDAdvantage
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From the Desk of
Patricia A. Costante
Welcome to the summer issue of MDAdvisor, which we dedicate to the millions of patients, caregivers and families who are living and coping with dementia and Alzheimer’s disease every day. Alzheimer’s disease is the sixth leading cause of death in the United States, killing more than half a million seniors each year. To put this in perspective, Alzheimer’s disease currently kills more people each year than prostate cancer and breast cancer combined. With 5.8 million Americans living with Alzheimer’s dementia, it is difficult to find anyone who has not been impacted by this heartbreaking disease personally, myself included. By 2050, the number of people age 65 and older with Alzheimer’s dementia is projected to grow to 13.8 million, barring a significant medical breakthrough. Although the FDA has approved six drugs to date for the treatment of Alzheimer’s, none of them slow or stop the damage to and destruction of neurons that cause the symptoms and make the disease fatal. With the lack of progress in developing effective drugs, many of the advances in recent years have focused on non-pharmacologic therapies, with a goal of improving the ability to perform activities of daily living or overall quality of life. Many researchers believe that the best hope for alleviating Alzheimer’s disease will be to slow or stop the progression very early in the disease process. I wish to thank Contributing Editors Jeff Klein and Mike Splaine for providing their guidance and expertise for this special issue. I would like to express my appreciation to all of the authors included in this issue who took the time to share their knowledge and insights. I am especially grateful to Tom Doyle, who generously agreed to share his personal experiences as he learns to navigate life with a diagnosis of early-onset Alzheimer’s disease and secondary Parkinsonism, and to all of the patients with Alzheimer’s who are participating in clinical trials now for the benefit of future generations. And last I urge primary care physicians to perform routine cognitive assessments for all patients age 65 and older, as early detection of Alzheimer’s and other dementias has been proven to provide a host of benefits for affected individuals and caregivers.
Chairman & CEO MDAdvantage Insurance Company
News & Acknowledgements Congratulations NJ Governor Murphy nominated Judy Persichilli, RN, BSN, MA, as Commissioner of the New Jersey Department of Health. In her new role, Judy will be stepping down as an Editorial Board member of MDAdvisor, but we look forward to working with her in this new capacity.
36th Annual Healthcare Advertising Awards Kudos! MDAdvisor was recently named a Merit Winner in the 36th Annual Healthcare Advertising Awards in the Publication External category.
Walk to Support Alzheimer’s Care and Research The Walk to End Alzheimer’s, held annually in more than 600 communities nationwide, is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. There are many walks coming up across the nation this fall, including 7 in New Jersey, 28 in Pennsylvania, 2 in Delaware and 7 in Connecticut. Find an Alzheimer’s Association Walk to End Alzheimer’s® near you at act.alz.org. Additionally, there are 5 walks in New Jersey through Alzheimer’s New Jersey Walk to Fight Alzheimer’s, which are listed at alznj.org.
Material published in MDAdvisor represents only the opinions of the authors and does not reflect those of the editors, MDAdvantage Holdings, Inc., MDAdvantage Insurance Company and any affiliated companies (all as “MDAdvantage®”), their directors, officers or employees or the institutions with which the author is affiliated. Furthermore, no express or implied warranty or any representation of suitability of this published material is made by the editors, MDAdvantage®, their directors, officers or employees or institutions affiliated with the authors. The appearance of advertising in MDAdvisor is not a guarantee or endorsement of the product or service of the advertiser by MDAdvantage®. If MDAdvantage® ever endorses a product or program, that will be expressly noted. Letters to the editor are subject to editing and abridgment. MDAdvisor (ISSN: 1947-3613 (print); ISSN: 1937-0660 (online)) is published by MDAdvantage Insurance Company. Printed in the USA. Subscription price: $48 per year; $14 single copy. Copyright © 2019 by MDAdvantage®. Postmaster: Send address changes to MDAdvantage, 100 Franklin Corner Road, Lawrenceville, NJ 08648-2104. For advertising opportunities, please contact MDAdvantage at 888-355-5551.
MDADVISOR | Summer 2019
What’s Happening in Healthcare? Anticholinergic Medications May Increase Dementia Risk by 50% Scientists have known about the connection between anticholinergic drugs and an increased risk of dementia for some time. A new study in JAMA Internal Medicine (June 24, 2019) now suggests that anticholinergics could be upping the risk of dementia by as much as 50% in those who took an equivalent of 3 years’ daily use of an anticholinergic medication at the minimum effective dose. Associations were strongest for the anticholinergic antidepressants, bladder antimuscarinics, antipsychotics and antiepileptic drugs. It is unknown whether the association is causal.
Alzheimer’s Tau Tangles More Likely to Accumulate in Women than in Men Gender plays an important role in Alzheimer’s disease risk, with women having a higher lifetime risk of developing the disease and an increased vulnerability to genetic risk factors. New research presented at the 2019 Annual Meeting of the
Society of Nuclear Medicine and Molecular Imaging has found that women with the APOE4 gene (the most common genetic risk factor for Alzheimer’s) who are already experiencing mild cognitive decline are more susceptible than men with APOE4 to tau tangle accumulation in the brain.
Alzheimer’s Blood Test Elecsys Performs Well Researchers are getting closer to developing a simple blood test to diagnose Alzheimer’s disease. A study published in JAMA Neurology (June 24, 2019) found that a blood-based biomarker test called Elecsys correctly identified people with betaamyloid plaques (a hallmark of Alzheimer’s disease) with 80% accuracy, and became 5% more accurate when researchers factored in the presence of the APOE4 gene. The accumulation of beta-amyloid plaques in the brain occurs long before the development of Alzheimer’s symptoms. The blood test was developed by Roche Diagnostics and researchers at Lund University, Sweden.
A Journal for the Healthcare Community Publisher
Patricia A. Costante, FACHE Chairman & CEO MDAdvantage Insurance Company Publishing & Business Staff
Catherine E. Williams Senior Vice President MDAdvantage Insurance Company Janet S. Puro Vice President MDAdvantage Insurance Company Theresa Foy DiGeronimo Copy Editor Second Melody Design and Layout Contributing Editors
Steve Adubato, PhD Jeffrey Klein, FACHE Michael Splaine, MA Editorial Board
Paul J. Hirsch, MD, Editor-in-Chief Hon. Paul W. Armstrong, JSC (Ret.) Jon R. Bombardieri Jeremy S. Hirsch, MPAP William G. Hyncik, ATC John Zen Jackson, Esq. Alan J. Lippman, MD Emerging Medical Leaders Advisory Committee
Fernando Arias Nicole Caltabiano Jodie Kunkel A. Michael Luciani Christina McArdle Morit Segui Published by MDAdvantage Insurance Company
100 Franklin Corner Road Lawrenceville, NJ 08648-2104 www.MDAdvantageonline.com Phone: 888-355-5551 Editor@MDAdvisorNJ.com Indexed in the National Library of Medicine’s Medline® database. 4
MDADVISOR | Summer 2019
Table of Contents
25 Alzheimer’s: Ethical Questions and Answers from Diagnosis to Dying
| By Stephen G. Post, PhD
01 Letter from MDAdvantage
Chairman and CEO Patricia A. Costante
06 Hospital2Home: Dementia Capable Care Transitions–Better Care and Better Outcomes
| By Jeffrey B. Klein, MBA, FACHE
What Primary Care Physicians Need to Know About Dementia
| By Nicole Sestito, PhD, ABPP/CN, Lisa Bodenheimer, LCSW, and Christian P. White, DO
19 Thinking About Thinking:
Why Cognition Should Be the Sixth Vital Sign
| By Michael Splaine, MA
32 Living with Early-Stage Alzheimer’s
Disease: A Personal Perspective from Tom Doyle
| I nterviewed by Catherine E. Williams and Janet S. Puro, MPH, MBA
36 The Latest Advancements in
Alzheimer’s Research: An Interview with Rudolph Tanzi, PhD
| I nterviewed by Janet S. Puro, MPH, MBA
41 Working to End the HIV Epidemic |B y Assistant Commissioner Christopher Menschner
44 Primary Care Physician Training
Opportunity: The Alzheimer’s and Dementia Care ECHO® Program
| By Morgan Daven
21 Legislative Update: Dementia and Alzheimer’s Disease and Other Healthcare Legislative News
| By Jon Bombardieri
HOSPITAL2HOME: DEMENTIA CAPABLE CARE TRANSITIONS–BETTER CARE AND BETTER OUTCOMES BY JEFFREY B. KLEIN, MBA, FACHE
Persons with dementia and their care partners experience exceptional challenges receiving dementia capable healthcare and related community-based care transition services during and after a hospital stay. This is the case although persons with dementia are hospitalized nearly twice as often as their peers who are cognitively healthy.1 During a hospital stay, persons with dementia are at higher risk for “delirium, falls, dehydration, inadequate nutrition, untreated pain and medication-related problems.”2 They are also “more likely to wander, to exhibit agitated and aggressive behaviors, to be physically restrained, and to experience functional decline that does not resolve following discharge.”2 Yet hospitals and emergency departments do not routinely assess older individuals for cognitive issues, even when patients are unreliable reporters of their medical history, have difficulty answering questions or defer to family to respond, fail to follow instructions or are told of memory issues by their caregivers.
practice program offering dementia capable care to patients, and achieving better outcomes for these patients when they transition from hospital to home.
BETTER HOMECARE BEGINS IN THE HOSPITAL
On any day, as many as 25 percent of elderly hospital patients may have dementia, often without a documented or recorded diagnosis.4 These patients frequently seek hospital or emergency department care due to dementia-related complications, including challenging behaviors, chronic or acute illnesses and accidents or falls. Unfortunately, “dementia increases the burden on acute care systems and is associated with excessive use of nursing resources, higher complication rates and longer stays.”5 However, a knowledgeable hospital staff is in the ideal position to recognize and address the needs of patients with cognitive impairments before they become an unmanageable burden. Hospital2Home staff are trained to be alert to the following:
Best practices in hospital care and home transition for patients with dementia have been shown to reduce readmission rates, and mitigate the potential for poor outcomes, such as medication errors, infections and falls, as well as the care risks during transitions that include inability to understand or follow discharge instructions and medication schedules, failure to effectively communicate with caregivers about managing complex care and high burden for caregivers following the hospitalization.3 Unfortunately, evidence-based care transition models have routinely excluded patients with dementia, and often have limited interactions with caregivers.
1 Admission to a hospital or emergency department visit can present an opportunity to identify individuals living alone with dementia, including those who would benefit from more intensive community supports and persons in potentially unsafe situations. These patients can be unaware of services, lack financial resources to pay for care and/or possess limited insight into their changing cognitive capacity. Hospitals can work with direct care staff to recognize common signs of dementia; this is especially critical for individuals living alone without family or a support network.
Nevada Senior Services has developed a comprehensive array of services that serve as a model of a successful dementia capable system. Over the past decade, the organization has embraced a strategy called Hospital2Home to support individuals living with dementia, along with their care partners. The details of this program, outlined here, serve as an example of a successful best-
2 Persons with moderate to severe dementia are more likely than those without cognitive impairments to have co-morbidities that result in hospitalization, such as coronary artery disease, stroke, diabetes and cancer. Throughout the middle and later course of dementia, there can be an exacerbation of symptoms, including challenging
MDADVISOR | Summer 2019
behaviors. In many instances, behaviors are the precipitating cause of a trip to the emergency room. Caregivers often experience high levels of stress during and after hospitalization of their loved one, intensified by repeated hospital stays. 3 The majority of persons living with dementia will experience behavioral and psychological symptoms over the course of their illness. Care partners are often challenged to understand the cause, and effectively address common behaviors, particularly aggression, agitation and psychosis. Behavioral symptoms result in more frequent contact with healthcare professionals and emergency department visits. Once there, individuals are at risk for inappropriate referrals to psychiatric facilities, pharmacological treatments, restraints and nursing home placement. 4 Persons aging with intellectual and developmental disabilities (I/DDs) with Alzheimer’s disease (AD) and AD-related dementias (ADRD) or those at high risk of ADRD often experience the onset of dementia earlier than the general population. Diagnosing dementia in this population can be a difficult and complicated process, especially when conducted in a hospital setting. This is often compounded by the fact that more than 25 percent of individuals with I/DDs live with their aging parents, who are often in poor health due to the stress of long-term caregiving.6 Physicians are challenged in making this more complex diagnosis, as dementia is manifested in areas of functioning that may already be impaired by the developmental disability. Without a formal diagnosis, individuals with I/DDs are less likely to be connected with dementia capable resources.
HOSPITALS BUILD THE FOUNDATION FOR BETTER HOME CARE OUTCOMES
Hospital2Home’s Dementia Capable Care Transitions program was developed to address challenges that persons with ADRD and their care partners experience in receiving inpatient healthcare and related community-based care transition services during and after a hospital stay. The goal. The goal of the project is improving the healthcare outcomes for persons with ADRD and their care partners, by implementing an innovative delivery system known as Care Transitions for Persons with Dementia, utilizing an integrated instrumentality of evidence-based models. A system of care, connected to an integrated seamless post-hospitalization toolbox of evidence-based/ informed resources, is at the core of this innovative approach.
The objectives. The objectives of the project are as follows: 1) deliver an evidence-based care transition model and post-care transition services to persons living with ADRD and their care partners, within a community-based dementia capable framework, 2) offer short-term intensive respite services to care partners following hospital discharge and 3) provide dementia capable education and training to hospital staff. Outcomes. Targeted outcomes include enhancement of an evidence-based care transition model in conjunction with post-care transition services, to improve healthcare outcomes for persons with ADRD and their caregivers through these six factors: 1) reduced readmission rates, 2) decreased caregiver burden, 3) decreased caregiver depression, 4) decreased falls rate, 5) increased self-rated health, 5) increased caregiver coping and 6) enhanced patient–caregiver activation.
DEMENTIA CAPABLE EDUCATION MODEL
Older adults with dementia are more likely to have poor outcomes when hospital staff, especially those with direct contact (including nurses, social workers and nursing assistants), lack knowledge and training in caring for these patients and supporting their caregivers. One study demonstrated the positive impact of dementia training on the knowledge, confidence and attitudes of hospital staff.7 Hospital2Home’s dementia capable education program is designed to support and educate hospital staff and caregivers. The Hospital2Home program includes an informative seminar for clinicians and healthcare management, “Thinking about Thinking,” that addresses the key role cognition plays in patient success in the acute care environment. Additionally, the respite coach serves as a dementia capable advocate, an integral part of the care transitions team. Certified nursing assistants/respite coaches are trained using a specialized dementia-specific curriculum. Dementia capable education is delivered by the educator/ trainer, and tailored to hospital staff, for example, emergency department personnel, social workers, discharge planners and nurses. Dementia capable training also addresses the needs of caregivers. Hospital2Home offers a 90-minute workshop for caregivers, “Thoughtful Hospitalization,” to prepare caregivers for possible hospitalization, and to help them understand caregiver rights. It is widely recognized that the individual with ADRD and the caregiver benefit from a range of supportive services, including person-centered planning, evidenced-based interventions and other programs over the course of the illness.
POST-CARE TRANSITION SERVICES
Hospital2Home offers an innovative post-care transition
service following the 30-day evidence-based care transitions program. Post-care transition planning is conducted by the care transitions specialist at the 30-day post-assessment for ongoing and individualized support to enhance care. Person-centered plans are developed, and can be modified based on goals and needs, for example, changing symptoms, co-occurring health conditions, behavioral and psychological symptoms of dementia (BPSD) and caregiver support and education.
Hospital2Home has completed 1.5 years of operation since launch. Results to date have been impressive. Medicare Readmission Rate:H2H< 1 percent Southern Nevada >35 percent Currently, seven participating hospitals and 39 participating organizations. 188 referrals to date, currently averaging five to seven referrals per week.
based transition model. The program strives to provide post-care transition person- and family-centered planning for connections to community services, to partner with hospitals for education and training on dementia-specific practices and to provide intensive respite for caregivers following a hospitalization. Hospital2Home has proven to be highly effective in reducing hospital readmissions of persons with cognitive impairment. It has also provided, for the first time, a developing picture of the challenges faced by persons with cognitive impairment and their family caregivers as they interface with the healthcare delivery system. The roadmap suggested by the data provides useful data for effective post-discharge follow-up and program development. Hospital2Home is an impressive example of how we might develop a nationwide model for dementia capable care transitions resulting in better care and better outcomes. Hospital2Home: The initiative was made possible and supported by a grant from the Administration on Aging, Administration for Community Living (ACL) (NV90ILGG0015). Nevada Senior Services developed the program in close collaboration with Rush University Medical Center’s Bridge Program and the Valley Health System. The development team included Cognitive Solutions (dementia consultation), HealthInsight Nevada (QIO) and Sanford Center for Aging, University of Nevada Reno (program evaluation).
Discharge Challenges (n=54) Delayed Community Resources
Insufficient Home Support
Unsafe Physical Home Environment
Poor Primary Care Utilization
Discharge Plan Confusion
Jeffrey B. Klein, MBA, FACHE, is President and CEO of Nevada Senior Services Inc. 1
Phelan, E. A., Borson, S., Grothaus, L., Balch, S., & Larson, E. B. (2012, January). Association of incident dementia with hospitalizations. Journal of the American Medical Association, 307(2), 165–172.
Mezey, M., & Maslow, K. (2016). Recognition of dementia in hospitalized older adults. Best Practices in Nursing Care to Older Adults. https://consultgeri.org/try-this/dementia/issue-d5.pdf.
Cherry, D., Simmons, J., & Schlesinger, J. (2016, March). Care transitions for people with dementia. www.picf.org/wp-content/uploads/2016/04/ Care-Transitions-PPT-ASA-2016-FINAL.pdf.
Maslow, K. (2006). How many people with dementia are hospitalized? In N. M. Silverstein & K. Maslow (Eds.), Improving Hospital Care for Persons with Dementia. NY: Springer Publishing Co, Inc.
Andrieu, S., Reynish, E., Nourhashemi, F., Shakespeare, A., Moulias, S., Ousset, P. J., . . . Vellas, B. (2002). Predictive factors of acute hospitalization in 134 patients with Alzheimer’s disease: A one-year prospective study. International Journal of Geriatric Psychiatry, 17, 422–426.
Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., L., Lulinski, A., & Wu, J. (2015). The state of the states in developmental disabilities. 2013. Boulder: Department of Psychiatry and Coleman Institute, University of Colorado.
Galvin, J., Kuntemeier, B., Al-Hammadi, N., Germino, J., Murphy-White, M., & McGillick, J. (2010, October-December). Dementia-friendly hospitals: Care not crisis. Alzheimer’s Disease and Associated Disorders, 24(4), 372–379.
Referrals for Supports (n=55) Caregiver Support
Personal Care Assist
Durable Medical Equipment (DME)
Problem Landscape (n=55) Dementia Education
Dementia – Changes/Stages
Nevada’s Hospital2Home program is designed to build dementia capability, and reduce the impact of service gaps, by adding a dementia component to an existing evidence-
MDADVISOR | Summer 2019
WHAT PRIMARY CARE PHYSICIANS NEED TO KNOW ABOUT DEMENTIA
By Nicole Sestito, PhD, ABPP/CN, Lisa Bodenheimer, LCSW, and Christian P. White, DO
TO OBTAIN AMA PRA CATEGORY 1 CREDIT™, PARTICIPANTS ARE REQUIRED TO ADHERE TO THE FOLLOWING: 1 Review the CME information along with the learning objectives at the beginning of the CME article. Determine if these objectives match your individual learning needs. If so, read the article carefully. 2 Complete the post-test questions. These have been designed to provide a useful link between the CME article and your everyday practice. Read each question, choose the correct answer and record your answers on the Registration Form.
4 Complete the Registration and Evaluation Form online at: www.surveymonkey.com/r/ Summer2019CME If you cannot complete the form online, you may mail it to: MDAdvisor CME Dept c/o MDAdvantage Insurance Company 100 Franklin Corner Rd Lawrenceville, NJ 08648 Or fax to: 978-244-5112
3 Complete the evaluation portion of the Registration and Evaluation Form. Forms and tests cannot be processed if the evaluation section is incomplete.
5 Retain a copy of your test answers. Your answer sheet will be graded, and if a passing score of 80% or more is achieved, a CME certificate awarding AMA PRA Category 1 Credit™ and the test answer key will be mailed to you within 4 weeks. Individuals who fail to attain a passing score will be notified and offered the opportunity to reread the article and take the test again. 6 Mail the Registration and Evaluation Form on or before August 1, 2020. Forms received after that date will not be processed.
Authors: Nicole Sestito, PhD, ABPP/CN, Lisa Bodenheimer, LCSW, and Christian P. White, DO, Rowan University School of Osteopathic Medicine, Department of Geriatrics and Gerontology, and the New Jersey Institute for Successful Aging (NJISA), Stratford, New Jersey. Accreditation Statement: HRET is accredited by the Medical Society of New Jersey to provide continuing medical education for physicians. This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Medical Society of New Jersey (MSNJ) and through the Joint Providership of Health Research Education and Trust of New Jersey (HRET) and MDAdvantage. HRET is accredited by the Medical Society of New Jersey to provide continuing medical education for physicians. AMA Credit Designation Statement: HRET designates this enduring activity for 1.0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Disclosure: The content of this activity does not relate to any product of a commercial interest as defined by the ACCME; therefore, there are no relevant financial relationships to disclose. No commercial funding has been accepted for the activity.
LEARNING OBJECTIVES At the conclusion of this activity, participants will be able to: 1 Discuss the importance of early diagnosis in Alzheimer’s disease and other dementias. 2 Understand the benefit of cognitive testing as a screening tool. 3 Discuss the importance of proactive advance care planning for patients with Alzheimer’s disease. 4 Describe how to integrate caregivers into the care of patients with dementia.
MDADVISOR | Summer 2019
Alzheimerâ€™s disease and other dementias currently affect more than 5 million people in the United States, and projections show that more than 13 million people will be impacted by the year 2050.1 For many of these patients and their caregivers, primary care is the first, and sometimes only, resource available,2 making the primary care physician (PCP) a vital source of guidance and information when an individual begins to experience cognitive, functional or behavioral changes.
analysis, access to early intervention and education that may prevent institutionalization, ruling out reversible causes of cognitive decline and the ability to consent to participate in research and clinical trials for disease-modifying drugs. Early diagnosis also allows patients and their families to make legal and financial plans.9 The ultimate goal of early detection is to improve the quality of life of patients during their remaining years, while reducing the caregiver and family burden as much as possible.
BARRIERS TO DIAGNOSIS Despite the growing numbers, dementia remains severely underdetected. More than 50 percent of people with dementia, mostly in the mild range but some with moderate dementia, have never received a diagnosis of dementia from a physician.3 Therefore, when a diagnosis of Alzheimerâ€™s disease is made, symptoms have likely been present for two to three years, on average.4
Elimination of reversible causes of cognitive decline. Early detection in the primary care setting can prompt an evaluation for reversible causes of cognitive loss before a referral to a specialist is made. Reviewing the medication list for potential culprits of cognitive disturbance can be done as a first step. Assessing for other reversible conditions, such as depression, sleep apnea, normal pressure hydrocephalus and others, is also crucial in the early stages, when interventions can be implemented with greater chances of success.
Many reasons have been identified as barriers to diagnosis in the primary care setting. These include but are not limited to fear of stigmatizing the patient, lack of training, diagnostic uncertainty, shortage of specialized diagnostic assessment tools, patient denial of issues and the reluctance of healthcare providers to make a diagnosis when no effective disease-modifying options are available.5 Although many PCPs identified concerns about the emotional impact of the diagnosis on the patient and suicide risk, there is little evidence to support a significant overall risk of suicide in dementia.6 In truth, primary care providers are ideally suited to detect and manage dementia. Given the regular and consistent contact with patients, primary care providers are in the best position to notice changes in functioning and cognition over time. The relationship and trust built between PCPs and their patients can also help facilitate assessment and care management, particularly when additional diagnostic assessments may be with specialists the patient has not seen before or with whom the patient has not built a relationship.7 IMPORTANCE OF EARLY DIAGNOSIS Physicians, caregivers and patients alike may question the necessity of an early diagnosis in dementia when treatment options are limited, and the progression of the disease cannot be stopped.5 Physicians, in particular, may weigh the potential risks and benefits of an early diagnosis, and the potentially negative consequences of a dementia diagnosis.8 However, the range of benefits that an early diagnosis can provide to patients is believed to offset potential negative consequences. These benefits include enabling a thorough review of medications, with risk/benefit
Obstructive sleep apnea is one disorder in particular where adequate treatment can have profound results. Sleep apnea is associated not only with cognitive decline but also with structural changes in the brain, including atrophy of the hippocampi, microbleeds and white matter damage.10 Sleep apnea has a tendency to present differently in the older adult who may not have the obvious risk factors,11 but screening is crucial, as just one year of adequate treatment has been found to lead to improvements in cognition and white matter integrity in the brain.12 This highlights the importance of ruling out potentially reversible causes of cognition. Improved treatment and medical decisions. Early detection of dementia by primary care physicians can also be critical in effectively treating other comorbidities commonly found in the elderly. Physicians may be confused by uncontrolled hypertension, diabetes, etc., when poor medication compliance due to cognitive loss could be to blame. It may also explain sporadic or nonexistent follow-up. Awareness of the presence of a dementia and neurodegenerative process may also help inform treatment decisions. For example, dementia is the leading risk factor for delirium, which alters the course of cognitive decline, resulting in more rapid progression and worse long-term outcomes.13 There are many risk factors for delirium that are potentially avoidable, such as the use of specific medications, severe pain and surgery.14 Knowledge of a dementia diagnosis would allow more discussion about whether a patient should proceed with a
surgical procedure, given the increased likelihood of postoperative delirium and potentially permanent cognitive and functional declines.15 Proactive advance care planning. Early detection also allows for proactive planning to begin at a milder level of impairment, before a crisis disrupts the patient’s life and requires urgent intervention. Furthermore, confirmation of a diagnosis of dementia in the milder stages allows the patient to be involved in his or her care and future planning, including decision making regarding advance directives, living placements and estate management.16 The position of the American Geriatric Society is that advance care planning is a critical tool for helping individuals articulate and document their preferences to ensure that the care they receive matches their wishes, particularly near the end of life. Advance care planning improves care and quality of life, while increasing satisfaction with the healthcare system and reducing stress, anxiety and depression for older adults, family caregivers and other relatives.17 Attempting to manage legal affairs once a person has reached a stage of cognitive impairment where he or she is no longer able to make decisions can be costly, time-consuming and stressful. Earlier identification may also assist families in preventing harm that can come to vulnerable persons, such as mismanaging or scamming of financial assets, falling, getting lost or having an accident while driving. Caregiver education. From a familial perspective, early detection can offer a clinical explanation regarding the changes family members are observing in their loved one. This can be especially valuable when personality changes (apathy, withdrawal, irritability or disinhibition) are the earliest symptoms, and may be seen as being within the patient’s control. Caregivers may experience the disclosure of the dementia diagnosis as a confirmation of suspicions18 or even with relief.19 Interventions for caregivers, including psychoeducation, supportive counseling, support groups and respite care, can have a significant impact in the earlier stages of the disease.20 IMPORTANCE OF COGNITIVE TESTING Neuropsychological assessment is frequently used in the diagnosis of dementia. The neuropsychological assessment integrates information from clinical interviews, medical history, behavioral observations and performance on standardized and validated cognitive tests. Individual scores are compared to normative reference groups, taking into account personal characteristics, such as age, level of education and estimated premorbid abilities.21
MDADVISOR | Summer 2019
Inclusion of a neuropsychological assessment in the diagnostic workup may ease some of the concerns expressed by physicians, and improve diagnostic accuracy, determine level of severity and inform recommendations and interventions.22 Neuropsychology can also play a role in tracking disease progression with the use of serial cognitive assessments. Improve diagnostic accuracy and define level of impairment. An abundance of evidence shows the neuropsychological evaluation improves diagnostic accuracy in patients with dementia over and above routine clinical evaluation alone.23 The evaluation plays a crucial role in the differential diagnosis of cognitive complaints. Neuropsychological assessment has been shown to be highly effective at distinguishing between cognitively normal and cognitively impaired older adults. Importantly, the results of a neuropsychological evaluation can help distinguish between mild neurocognitive disorder (formerly mild cognitive impairment, MCI) and dementia.24 Mild neurocognitive disorder is a pre-clinical stage; the presence of this condition has relatively high predictive value for conversion to dementia, specifically Alzheimer’s disease. The exact predictive value and rate of conversion are highly dependent on the cognitive profile elucidated by neuropsychological testing.25 Individuals who display severe impairments in memory consolidation (amnestic) are at higher risk of conversion to dementia in the future.26 The ability to identify patients at this stage helps determine who is at greatest risk for developing dementia, and can inform which patients need closer monitoring and resources. In addition, studies have shown that a portion of patients diagnosed with mild neurocognitive disorder actually improve over time.27 This pre-clinical period may also represent a time when interventions to change lifestyle factors and target risk factors, namely, cerebrovascular risk factors, are most effective. Determine specific etiology. Neuropsychological and cognitive testing also helps inform specific etiology among the dementia types. Although Alzheimer’s disease (AD) is the leading cause of dementia in the elderly, it has been known for some time that dementia can arise from a wide variety of etiologically and neuropathologically distinct disorders, that give rise to different patterns of cognitive strengths and weaknesses. Distinct patterns of cognitive deficits occur in AD and other neurodegenerative disorders, such as Parkinson’s disease, dementia with Lewy bodies (DLB), frontotemporal dementia (FTD) and vascular dementia.23
Although a definitive etiology cannot truly be determined until post-mortem, defining the disease and clinical features is important for several reasons. One of the clearest reasons is that different dementias have different courses and prognoses. DLB, for example, has been shown to have a less favorable prognosis than AD and other dementias. There is accelerated cognitive decline, shorter lifespan, increased institutionalization and more significant caregiver burden.28 In addition, these patients tend to have more prominent neuropsychiatric symptoms, but are at higher risk of serious adverse reactions to antipsychotic drugs, including potentially life-threatening neuroleptic malignant syndrome.29 Similarly, the course of FTD may be punctuated by severe changes in behavior and/or language, and not the traditional decline in memory associated with AD.30 Therefore, differential diagnosis can be crucial in determining appropriate treatment methods, and providing accurate education to patients and their families about what to expect as the disease progresses. IMPORTANCE OF INTEGRATING CAREGIVERS IN DEMENTIA CARE Evidence-based interventions for neurodegenerative diseases do exist, and have been found to alleviate the burden of disease. Unfortunately, as described by Lathren, Sloane, Hoyle, Zimmerman and Kaufer,31 many physicians report poor knowledge of available resources, unease with dementia counseling and family education and overall low referral rates to social services. Because of this, community resources are often underutilized. Involving caregivers in intervention is crucial, because they provide the largest proportion of care for people with dementia. According to the Alzheimer’s Association, “In 2018, 16.3 million family members and friends provided 18.5 billion hours of unpaid care to people with Alzheimer’s and other dementias, at an economic value of nearly $234 billion.”32 Significance of caregiver burden in dementia. Caregiver stress and burden are a nationwide concern. The task of family caregiving for a person living with dementia, although rewarding, is not easy. Caregivers face many obstacles as they balance caregiving with other demands, including child-rearing, careers and relationships. Caregivers are at increased risk for the burdens of care, stress, depression and various other health complications.33 Numerous studies have shown that caregivers of people with dementia experience
increased stress when compared to caregivers of individuals without dementia.34 Caregivers of individuals with dementia spend significantly more time per week providing care, and report greater impacts on employment, mental and physical health, leisure time and family life. In some cases, people living with dementia have drastic changes in mood and behavior, exhibiting symptoms of aggression, paranoia, wandering or apathy35—all of which have to be navigated, day after day, by their caregivers. In 2018, the New Jersey State Legislature signed a bill establishing the New Jersey Caregiver Task Force to evaluate and provide recommendations for caregiver support services, recognizing the 1.75 million New Jerseyans who are providing unpaid care to the elderly.36 The state senate acknowledged that many of these caregivers are asked to provide complex tasks without skill training or support, such as administering multiple high-risk medications and operating medical equipment. The legislation also addressed concerns that caregivers, in comparison to non-caregivers, experience more physical health and mental health problems, such as depression, compromised immune response and higher rates of hospitalization. The healthcare system does not have the resources to provide this level of care should family caregiving no longer be available.
“In some cases, people living with dementia have drastic changes in mood and behavior... which have to be navigated, day after day, by their caregivers.” What caregivers want from their primary care physicians. Cohen, Pringle and LeDuc reviewed studies examining how caregivers for patients with dementia perceive their interactions with family physicians and what they hope to get from these providers.37 Most often repeated was that caregivers wanted recognition for the importance of their caregiver role and the challenges they faced. Families of affected individuals wanted a diagnosis of dementia communicated to them directly, and did not want the physician to step around the issue. Family members often did not feel they had received adequate information from their family physician. Caregivers expressed they wanted assistance with behavioral
problems, referrals to agencies and regularly scheduled visits with the primary physician. Providing support and resources. Primary care providers can support family caregivers in several ways. Acknowledging caregivers as the “hidden patients” in need of direct or indirect intervention can create a supportive environment in the treatment room.38 Understanding and acknowledging the challenges of caregiving can also create such an environment. Some clinicians opt to conceptualize the dyad (patient and caregiver) as one treatment unit, understanding that the wellness of the patient is dependent on the wellness of the caregiver. They may ask how the caregivers are engaging in selfcare, and encourage them to routinely follow up with their own medical appointments. Some clinicians adhere to the principles of the patient-centered medical home and conceptualize the caregiver as part of the treatment team39, tasked with carrying out complex aftercare plans, sometimes in the face of adversity. In these cases, clinicians provide the caregiver with education about the disease process and give clear instruction on how best to manage symptoms at home. If you do not already do so, reframing how you view the patient and caregiver can affect the way you communicate, validate and address caregiving concerns. If you wish to formalize this practice as a routine part of usual care, several validated tools exist, such as the Zarit Caregiver Burden Scale, which can screen and track caregiver stress. Helping families navigate the health and social-care systems is an important aspect of holistic care. However, due to time constraints and staffing, it can be challenging to provide a personalized care plan complete with community resources. Physicians should be aware that while these services were not traditionally reimbursed by Medicare, they are now covered since the implementation of CPT code 99483 in January 2019. This code covers “assessment of and care planning for a patient with cognitive impairment, requiring an independent historian, in the office or other outpatient, home or domiciliary or rest home.”40 In addition, having general knowledge of a few key agencies and offering educational material can point families in the direction of those who might be able to help them. For example, there are 21 counties in the state of New Jersey. Each county has an Area Agency on Aging/Aging and Disability Resource Connection (AAA/ADRC). This agency functions as a “no wrong door” (based on Centers for Medicare & Medicaid Services guidelines) single point of entry for adults seeking supportive services and community resources. All caregivers should be made
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aware of AAA/ADRC, and encouraged to call to determine whether their loved one is eligible for state or county programs, such as day programs, home health, senior centers and transportation. Even if the patient is in the mild stage of the disease and does not require formal services at this time, families should familiarize themselves with what is available. Additionally, the Alzheimer’s Association has chapters in the northern and southern parts of the state. The Alzheimer’s Association provides extensive educational material, family caregiver conferences, support groups and a 24-hour helpline. If feasible, families and patients can be referred to a specialized memory care clinic for evaluation, education and links to community services, while still maintaining their primary care relationship. The state of Connecticut offers five Area Agencies on Aging, which are private nonprofit planning agencies that fund social services, nutritional services, family caregivers support services and adult day care aides for patients with Alzheimer’s disease and related dementia. Additionally, the Alzheimer’s Association has four chapters throughout Connecticut.
PHYSICIAN RESOURCES •
Alzheimer’s Association Resources for Healthcare Professionals: This website provides resources and information to enhance Alzheimer’s and dementia patient care and professional development. A PocketCard app is also available for download. https://alz.org/professionals/ healthcare-professionals
Information and Resources on CPT Code 99843: Cognitive assessment and care plan services. https://alz.org/professionals/healthcareprofessionals/care-planning
CAREGIVER RESOURCES •
Area Agency on Aging/Aging and Disability Resource Connection 1-800-235-5353
Alzheimer’s Association 24-hour helpline 1-800-272-3900
Rowan SOM, New Jersey Institute for Successful Aging, Memory Assessment Program (located in southern New Jersey) 856-566-6843
COPSA, Memory Care Clinic (located in central New Jersey) 1-800-969-5300
“The primary care physician is such a vital source of guidance and information” In Pennsylvania, there are 52 Area Agencies on Aging that cover all 67 counties. Adult day centers provide social, recreational and health services for older Pennsylvanians, and are a resource for families and other caregivers who work and are unable to provide assistance during work hours. The state has more than 500 senior community centers that offer meals, recreation, health and wellness programs. The Pennsylvania Link to Aging and Disability Resources connects consumers to the full range of services available. Additionally, the Alzheimer’s Association offers 10 regional offices throughout the state of Pennsylvania. All of these agencies, organizations and resources are available to help patients and caregivers find their way through the often confusing maze of the healthcare system after a diagnosis of Alzheimer’s or related dementia. But none can be of any help if those in need do not know what is available to them. That is why the primary care physician is such a vital source of guidance and information when an individual begins to experience cognitive, functional or behavioral changes. CONCLUSIONS Primary care physicians are playing an increasingly integral role in the diagnosis and management of Alzheimer’s disease and other dementias. Although there are barriers to the diagnosis and care of dementia in the primary care setting, primary physicians are crucial in early detection of cognitive decline. Equipped with appropriate resources and information, primary care physicians can direct patients and their caregivers to receive the support they need. Nicole Sestito, PhD, ABPP/CNs, is a clinical neuropsychologist and Assistant Professor at Rowan University School of Osteopathic Medicine (SOM), Department of Geriatrics and Gerontology and the New Jersey Institute of Successful Aging (NJISA). Lisa Bodenheimer, LCSW, MSW, is a clinical social worker and instructor at Rowan University SOM, Department of Geriatrics and Gerontology and NJISA. Christian P. White, DO, is a geriatric psychiatrist and Assistant Professor at Rowan University SOM, Department of Geriatrics and Gerontology and NJISA.
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Ancoli-Israel, S. (2007). Sleep apnea in older adults: Is it real and should age be the determining factor in the treatment decision matrix? Sleep Medicine Review, 11(2), 83–85.
Summers, M. J., & Saunders, N. L. (2012). Neuropsychological measures predict decline to Alzheimer’s dementia from mild cognitive impairment. Neuropsychology, 26, 498–508.
Castronova, V., Scifo, P., Castellano, A., Aloia, M. S., Iadanza, A., Marelli, S., . . . Falini, A. (2014). White matter integrity in obstructive sleep apnea before and after treatment. Sleep, 37(9), 1465–1475.
Busse, A., Hensel, A., Guhne, U., Angermeyer, M. C., &. RiedelHeller, S. G. (2006). Mild cognitive impairment: Long-term course of four clinical subtypes. Neurology, 67, 2176–2185; García-Herranz, S., Díaz-Mardomingo, M. C., & Peraita, H. (2016). Neuropsychological predictors of conversion to probable Alzheimer disease in elderly with mild cognitive impairment. Journal of Neuropsychology, 10(2), 239–255.
Mueller, C., Ballard, C., Corbett, A., & Aarsland, D. (2017). The prognosis of dementia with Lewy bodies. The Lancet Neurology, 16(5), 390–398.
McKeith, I. G., Dickson, D. W., Lowe, J., Emre, M., O’Brien, J. T., Feldman, H., . . .Yamada, M. (2005). Diagnosis and management of dementia with Lewy bodies: Third report of the DLB Consortium. Neurology, 65(12), 1863–1872.
Warren, J. D., Rohrer, J. D., & Rossor, M. N. (2013). Frontotemporal dementia. British Medical Journal, 347, 1–9.
Inouye, S. K. (2006). Delirium in older persons. New England Journal of Medicine, 354, 1157–1165.
Fong, T. G., Tulebaev, S. R., & Inouye, S. K. (2009). Delirium in elderly adults: Diagnosis, prevention and treatment. Nature Reviews Neurology, 5(4), 210–220.
Bates, A. T. (2014). Understanding and treating delirium. Psychiatric Times, 31(12), 41–45.
Borson, S., Frank, L., Bayley, P. J., Bouston, M., Dean, M., Pei-Jung, L. . . . Ashford, J. W. (2013). Improving dementia care: The role of screening and detection of cognitive impairment. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 9(2), 151–159.
American Geriatric Society. (2011). Advance care planning for older adults. www.americangeriatrics.org/sites/default/files/inlinefiles/AGS%20Statement%20on%20Advance%20Care%20 Planning_FINAL%20%28August%202017%29.pdf.
Derksen, E., Vernooij-Dassen, M., Gillissen, F., Olde-Rikkert, M., & Scheltens, P. (2005). The impact of diagnostic disclosure in dementia: A qualitative case analysis. International Psychogeriatrics, 17, 319–326.
van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Verhey, F. R. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: A long and winding road. International Psychogeriatrics, 23(9), 1393–1404.
Lathren, C. R., Sloane, P. D., Hoyle, J. D., Zimmerman, S., & Kaufer, D. I. (2013). Improving dementia diagnosis and management in primary care: A cohort study of the impact of a training and support program on physician competency, practice patterns, and community linkages. BMC Geriatrics, 13, 134.
Alzheimer’s Association. (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 14, 367–429.
Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228.
Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9), 23–27; Ory, M. G., Hoffman, III, R. R., Yee, J. L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. Gerontologist, 39(2), 177–185.
de Vugt, M. E., & Verhey, F. R. J. (2013). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62.
Lezak, M. D., Howieson, D. B., Bigler, E. D., & Tranel, D. (2012). Neuropsychological assessment (5th ed.). New York, NY: Oxford University Press.
Geroldi, C., Canu, E., Bruni, A. C., Dal Forno, G., Ferri, R., Gabelli, C., . . . Frisoni, G. B. (2008). The added value of neuropsychologic tests and structural imaging for the etiologic diagnosis of dementia in Italian expert centers. Alzheimer’s Disease and Associated Disorders, 22(4), 309–320; Pinskser, D., Lo, A. H. Y., Haslam, C., Pachana, N. A., & Pinsker, H. (2018). Hit or miss? Diagnostic contributions of neuropsychological assessment in patients with suspected dementia. International Journal of Clinical Neurosciences and Mental Health, 5, 1–8.
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Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73.
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PRIMARY CARE PHYSICIANS NEED TO KNOW ABOUT DEMENTIA Deadline for Response: August 1, 2020
This post-test may also be completed online at www.surveymonkey.com/r/summer2019CME
1 Primary care physicians are ideally suited to detect and manage dementia for the following reasons: a. They are the only members of the medical community specifically trained to test for dementia. b. They often have a long-term relationship with patients that allows them to see cognitive changes over time. c. Patients often trust their primary care physicians more than they trust specialists they do not know well. d. A & B e. B & C 2 The recognized benefits of early diagnosis in Alzheimer’s disease and other dementias include the following: a. Enabling access to early intervention and education that may prevent institutionalization b. Ruling out reversible causes of cognitive decline c. Allowing patients and their families to make legal and financial plans d. A & C e. A, B & C 3 The benefits of cognitive testing as a screening tool include the following: a. Improve diagnostic accuracy b. Define level of impairment c. Determine specific etiology d. A & B e. A, B & C 4 Because the course of Alzheimer’s and other forms of dementia varies from individual to individual, with no way to accurately predict severity of symptoms or the type of treatment that will be needed in the future, it is not advisable to recommend advance directives for these patients. a. True b. False 5 Physicians can better integrate caregivers into the care of dementia patients by providing the following: a. Recognition of the importance of the caregiver role b. Direct communication regarding the diagnosis of dementia c. Assistance with behavior problems d. Education regarding the disease and clear instructions about managing the symptoms e. All of the above
WHAT PRIMARY CARE PHYSICIANS NEED TO KNOW ABOUT DEMENTIA
REGISTRATION & EVALUATION FORM (Must be completed in order for your CME Quiz to be scored) Deadline for Response: August 1, 2020
REGISTRATION FORM First Name
Answer Sheet Circle the correct answer. 1) A B C D E
2) A B C D E
3) A B C D E
4) A B
5) A B C D E
Number of hours spent on this activity (reading article and completing quiz) I attest that I have read the article “What Primary Care Physicians Need to Know About Dementia” and am claiming 1 AMA PRA Category 1 Credit.™ Signature
1. The content of the article was:
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2. The author’s writing style was:
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3. The graphics included in the article were:
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4. The stated objectives of this program were:
Was this article free of commercial bias?
If not, why not Please share your name and contact information so that we may investigate further. Participant Name Telephone/Email: 5. Will the knowledge learned today affect your practice?
Very Much Moderately Minimally None
6. Based on your participation in the CME activity, describe ways in which you will change the way you practice medicine. ¨ Yes
¨ N/A Were you the wrong audience for this activity? 7. Did this CME Activity change what you know about: •
The importance of diagnosis in Alzheimer’s disease and other dementias. Yes ¨ No ¨
The benefit of cognitive testing as a screening tool. Yes ¨ No ¨
The importance of proactive advance care planning for patients with Alzheimer’s disease. Yes ¨ No ¨
How to integrate caregivers into the care of patients with dementia. Yes ¨ No ¨
8. Based on your participation today, what barriers to the implementation of the strategies or skills taught today have you identified?
Suggested topics for future programs:
MDADVISOR | Summer 2019
Thinking About Thinking:
Why Cognition Should Be the Sixth Vital Sign By Michael Splaine, MA
This morning in health settings all over the world, blood pressure, respiration, temperature and pulse are being measured. In many places, patients are being asked to describe their level of pain on a 10-point scale or by pointing at a picture. Information from these vital signs gives a present snapshot of health, and tracked over time, provides useful information for the patient and health professionals. The signs are easy to measure, easy to explain and universal. But something is missing from this vital-signs checklist—cognitive signs.
WHY MEASURE COGNITION?
The benefits to patients of identifying dementia in its early stages are well documented. As discussed in the article by Sestito, Bodenheimer and White on page 9 in this issue, these benefits include enabling access to available medication and to early intervention and education that may prevent institutionalization, ruling out reversible causes of cognitive decline and allowing patients and their families to make legal and financial plans.
We don’t think of our brains in the same way as the rest of our body, but for most of us, our brain is our largest organ. Our memory, executive function and processing are all vital to helping us manage other health conditions. We also know that with the aging population, there is the related risk of Alzheimer’s disease (AD) and other forms of dementia that needs to be acknowledged.
It is also important to assess the cognitive state of our patients given the financial benefits for the affected individuals and the country as a whole. Persons with Alzheimer’s don’t often have just this one disease—75 percent have one or more additional chronic diseases. A Medicare beneficiary with AD and another chronic disease will have costly medical bills—75 to 300 percent more in a year than a beneficiary with only one chronic disease.
Looking at irreversible dementia alone, the Alzheimer’s Association estimates that 5.8 million older adults in the U.S. have Alzheimer’s disease, a number projected to grow to 14 million by the middle of the century. There is no doubt that these numbers demand our attention—early and often.
Think about the thinking skills needed to manage diabetes, for example (medications, foot care and appointments), and it’s not hard to understand that a brittle diabetic with a brittle brain becomes very expensive very quickly, particularly if the cognitive impairment is not recognized and factored into their care.
To better understand the need to establish cognition as the sixth vital sign (measured at every routine senior citizen checkup), let’s take a look at the 2019 Alzheimer’s Disease Facts and Figures report.* This information can help us better understand where we stand on this issue as a healthcare community, and where we still need to go.
Additionally, Medicare beneficiaries with Alzheimer’s or other dementias have a 30 percent greater risk of having a preventable hospitalization than those without a neuropsychiatric disorder, and 21 percent of hospital stays are followed by a readmission within 30 days. This certainly places a financial burden on the individuals and the health system.
*All statistics presented in this article were obtained from the 2019 Alzheimer’s disease facts and figures. Alzheimer’s Dementia, 15(3), 321—387. [Available at www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf]
Something has to be done. Physicians and seniors are well aware of the need for cognitive testing. In the Alzheimer’s Association’s Primary Care Physician Cognitive Assessment Survey, 94 percent of primary care physicians acknowledged the importance of cognitive assessment for all patients age 65 and older. The Alzheimer’s Association Consumer Cognitive Assessment Survey found that four of five seniors believe it is important to have their thinking and memory checked, similar to how they have other routine assessments, but are waiting for their physicians to ask them about thinking and memory problems. Unfortunately, only one-quarter of seniors reported that a healthcare provider had ever asked if they have concerns about their thinking and memory. This disconnect between desire and practice highlights significant under usage of this important health assessment.
WHO SHOULD MEASURE COGNITION?
The Alzheimer’s Association has studied the question of who in the medical community is best suited to include cognitive assessments when taking routine vital signs. They found that the primary care physician (PCP) is best positioned to administer initial brief cognitive assessments, for several reasons. PCPs are likely to be the first point of contact for senior patients. PCPs are likely to have long-term relationships with patients, with more frequent appointments compared with a neurologist, psychiatrist or other specialist. Because PCPs’ care is continuous over time, they are better able to spot changes, and PCPs routinely coordinate care with other parts of the health system. Additionally, patients are more open to discussing sensitive issues, such as memory problems, with a provider they know and trust.
WHEN SHOULD COGNITION BE MEASURED?
An ideal opportunity for routine assessment leading to early identification of cognitive decline is offered through the Medicare Annual Wellness Visit (AWV). This benefit, introduced in 2011, is now a required component of the AWV, and available to any Medicare beneficiary who has received Medicare Part B benefits for at least 12 months and has not had an Initial Preventive Physical Exam or AWV within the previous 12 months. Awareness of this benefit is beginning to grow, but the number of beneficiaries taking advantage of this assessment is still low. In 2016, just 19 percent of the 55.3 million eligible Medicare Part B and Medicare Advantage beneficiaries utilized the AWV.
HOW SHOULD COGNITION BE MEASURED?
The Alzheimer’s Association’s 2019 special report Alzheimer’s Detection in the Primary Care Setting defined brief cognitive assessment as a short medical evaluation for
MDADVISOR | Summer 2019
cognitive impairment, performed by a primary care practitioner. This assessment can take several forms: •
Ask the patient directly about cognitive concerns.
Observe patient interactions and cognitive function directly during the visit.
Seek input about cognitive function from a patient’s family or friends.
Take physical exams, medical history and family history into account.
Use one or more brief structured assessment tools to obtain objective measures of cognitive function.
To help physicians perform brief cognitive assessments, the Alzheimer’s Association offers the Cognitive Assessment Toolkit that includes the Medicare Annual Wellness Visit Algorithm for Assessment of Cognition. Becoming familiar with this toolkit is a strong first step in making cognitive assessments a routine part of senior checkups. Unfortunately, less than 40 percent of PCPs are familiar with, and less than one-third report using, the Association’s toolkit.
There are many reasons PCPs do not include cognitive assessments in their routine checkup appointments with seniors. The Alzheimer’s Association’s Fact & Figures report noted that many seniors present no symptoms, some are resistant to the very idea, treatment options for Alzheimer’s are limited and more than half of PCPs say there is no time for this additional assessment during office visits. However, these reasons do not stand up against the numbers. The Alzheimer’s Association’s surveys of PCPs and seniors show us that physicians acknowledge the importance of cognitive testing, and seniors understand its value, but are waiting for a doctor to ask about their memory and thinking issues. Using the resources and tools now offered by the Association, it’s time for all PCPs to think carefully about the quality and quantity of cognitive assessments offered in their practices. It’s time to make cognition the sixth vital sign.
Michael Splaine, MA, is the Principal of Splaine Consulting, and has consulted on the Healthy Brain Initiative for the last eight years, after a more than 20-year career on the public policy and advocacy staff of the Alzheimer’s Association.
Legislative Update Dementia and Alzheimer’s Disease and Other Healthcare Legislative News By Jon Bombardieri
An estimated 5.8 million Americans of all ages are living with Alzheimer’s disease and related dementia, which includes one in 10 people age 65 and older. At the current pace, the number of people age 65 and older with the disease may grow to a projected 13.8 million by 2050.1 To date, there is no cure for Alzheimer’s disease or a way to stop or slow its progression; however, there are services— such as education programs and respite and support groups—that are helpful and important for the person with the disease, their loved ones and their caregivers. There are also a number of legislative bills seeking to ease the burden of dementia and Alzheimer’s disease.
Assembly Bill No. 2365/Senate Bill No. 1146: This legislation, sponsored by Assemblywoman Vainieri Huttle and Senator Codey, requires, under certain circumstances, that a notation be prominently displayed in a patient’s medical record indicating that the patient is at increased risk of confusion, agitation, behavioral problems and wandering due to a dementia-related disorder.2 The notation is to be made in the patient’s medical record, at the request of the patient’s caregiver, at the time the patient is admitted to the hospital or the hospital emergency department, or at the time that the patient is examined by a healthcare professional. A notation is also to be included by the hospital on the patient’s universal transfer form, and where practical, is to be additionally communicated electronically to any licensed healthcare facility to which the patient may be admitted upon discharge by the hospital. The bill defines “caregiver” to mean a relative, spouse, partner, friend or neighbor who has a significant relationship with the patient. “Dementia” is defined in
the legislation to mean a chronic or persistent disorder of the mental processes due to organic brain disease, for which no curative treatment is available and which is marked by memory disorders, changes in personality, deterioration in personal care, impaired reasoning ability and disorientation. “Healthcare professional” is defined to mean a physician, physician assistant or advanced practice nurse.
“From supervising my mother’s health needs for years, I understand the unique level of care that Alzheimer’s patients require,” said Vainieri Huttle. “This simple annotation will alert hospital staff to be more vigilant in their oversight of patients suffering from Alzheimer’s, dementia or other related conditions.”3 “Patients in hospitals with Alzheimer’s have unique needs and pose distinctive risks. Their condition must be known to the healthcare professionals responsible for their care so that they receive the attention they need,” said Senator Codey. “This can prevent avoidable situations like patients wandering from hospitals and endangering themselves. It’s common sense that we allow a patient’s medical record to reflect their condition to enable their effective care.”4 The legislation passed the Senate, and was approved by the Assembly Human Services Committee. The bill will now go to the General Assembly for a full vote, and then head to the Governor’s desk for his consideration. Assembly Concurrent Resolution No. 228/Senate Concurrent Resolution No. 164: This resolution sponsored by Assemblyman Conaway and Senator Singleton urges the Commissioner of Health to declare Alzheimer’s disease a public health crisis.5 Alzheimer’s disease currently has no cure, and is the sixth leading cause of death in adults age 18 or older in the United States and in New Jersey.5 Declaring Alzheimer’s disease a public health crisis may facilitate efforts to improve early detection, risk reduction and surveillance efforts, as well as to promote and encourage healthy behaviors and to educate the healthcare workforce concerning the diagnosis and treatment of Alzheimer’s disease. The legislation passed out of the Senate, and awaits action in the Assembly.
5.8 MILLION AMERICANS of all ages are living with Alzheimer’s disease and related dementia.1
At the current pace, the number of people age
65 AND OLDER
with the disease may grow to a projected
13.8 MILLION BY 2050. 1
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Senate Bill No. 827: This legislation, An Act Concerning Alzheimer’s Disease and Dementia Training and Best Practices, sponsored by Senator Logan, requires certain healthcare professionals who provide primary care or emergency treatment for adults to receive training in recognizing the signs and symptoms of Alzheimer’s disease and dementia, and to establish a working group to develop recommendations focused on improving the care of patients with Alzheimer’s disease or dementia.6 This bill modifies continuing education requirements for physicians and advanced practice registered nurses (APRNs). Current law requires these professionals to complete at least two contact hours of training or education during the first license renewal period in which continuing education is required, and at least once every six years thereafter on mental health conditions common to veterans and their family members. Starting January 1, 2020, the bill retains this continuing education requirement for APRNs, but allows physicians instead to complete at least two contact hours of training or education in the following: 1) diagnosing and treating cognitive conditions, including Alzheimer’s disease, dementia, delirium-related cognitive impairments and geriatric depression; or 2) diagnosing and treating any mental health condition, instead of only those common to veterans and their family members. The bill also allows, but does not require, APRNs to complete, on the same schedule, at least two contact hours of training or education on diagnosing and treating cognitive and mental conditions, including those listed above. By law, physicians and APRNs must generally complete 50 contact hours of continuing education every two years, starting with their second license renewal. Additionally, the bill requires the Executive Director of the Commission on Women, Children, and Seniors (CWCS) to establish a nine-member working group on Alzheimer’s disease and dementia. The working group must report its findings and recommendations by January 30, 2020, to the Aging Committee. The group terminates on the date it submits its report, or on December 1, 2020, whichever is later.
PENNSYLVANIA House Resolution No. 193: Sponsored by Representative McNiell, this resolution directs the Joint State Government Commission to conduct a study on the mental healthcare provider shortage in this commonwealth and to issue a report.7 At the very minimum, the Commission is to prepare its findings to 1) identify the factors behind the mental healthcare provider shortage, 2) make projections for the number of mental healthcare providers in Pennsylvania in five and 10 years, 3) determine how telemedicine can be used to extend the mental healthcare workforce in rural counties, 4) determine how Pennsylvania government entities can encourage more individuals to enter and remain in the mental healthcare workforce, 5) make recommendations for how to solve the disparity of mental healthcare providers in rural counties compared to urban and suburban counties and 6) recommend any other solutions to stop and reverse the mental healthcare provider shortage.
RHODE ISLAND House Bill No. 5178: Sponsored by Representative Shekarchi, this act would establish the Rhode Island Program to address Alzheimer’s disease.8 The purpose of the program would include the following: • Help accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s disease •
Coordinate the healthcare and treatment of individuals with Alzheimer’s disease
Ensure the inclusion of ethnic and racial populations who have a higher risk for the disease, or are less likely to receive care in clinical research and service efforts, with the goal of decreasing health disparities in the diagnosis and treatment of the disease.
This legislation would create a 13-member Advisory Council on Alzheimer’s Disease Research and Treatment. The Advisory Council would meet at least quarterly, and would advise the Governor, Speaker of the House and President of the Senate on developments and advances in the diagnosis, treatment and prevention of Alzheimer’s disease. In coordination with the Department of Health,
the Advisory Council would determine the number of residents diagnosed with Alzheimer’s disease, to ascertain the number of residents diagnosed with early-onset Alzheimer’s disease, regardless of age. The Advisory Council would identify available resources and services needed for the treatment and care of residents diagnosed with Alzheimer’s disease. Last, this legislation would also establish a training requirement for medical professionals. All physicians licensed pursuant to Chapter 37 of Title 5, and nurses licensed pursuant to Chapter 34 of Title 5, shall, no later than October 1, 2021, complete a one-time course of training consisting of a minimum of one hour of instruction on the diagnosis, treatment and care of patients with cognitive impairments, including, but not limited to, Alzheimer’s disease and dementia.
WEST VIRGINIA House Resolution No. 13: This resolution urges the Commissioner of the Bureau for Public Health to designate Alzheimer’s disease and other dementia as a public health 9 issue. Sponsored by Delegate Byrd, the intent of this resolution is to increase awareness of Alzheimer’s disease and dementia, and to address cognitive impairment, promote brain health and meet the needs of caregivers.
WASHINGTON, DC Council Bill No. 23-0325: This legislation creates the Dementia Training for Direct Care Workers Act of 2019.10 Sponsored by Councilmember Gray, this legislation provides that residential facilities shall provide at least eight hours of training pursuant to Department of Health rules and regulations that would be promulgated by this act. Each facility shall establish procedures for ongoing staff support regarding the treatment and care of persons with dementia, which shall include on-site mentoring programs and other support mechanisms. In the future, a minimum of four hours of continuing education will be required each calendar year for administrative staff and direct service staff members. The purpose of this act is to address gaps in current dementia training requirements, and to improve the quality of training for direct care workers.
DELAWARE House Bill No. 169: Sponsored by Representative Johnson, this legislation changes the relationship between physicians and physician assistants from supervisory to collaborative,11 in recognition of the evolving role of physician assistants, and reflecting the education, training and experience required for licensing, which emphasizes the team-based practice model. The bill retains a 1:4 ratio of physician assistants to physicians, unless a regulation of the Board increases or decreases the number. This limit of 1:4 does not apply to physicians and physician assistants who practice in the same physical office or facility building, such as an emergency department. This bill increases the number of Board of Medical Licensure and Discipline members from 16 to 18, to include two physician assistant members appointed by the Regulatory Council for Physician Assistants. The bill authorizes physician assistants to participate as uncompensated volunteers in public or community events.
MARYLAND House Bill No. 697/Senate Bill No. 868: Sponsored by Delegate Pendergrass and Senator Feldman, this act prohibits health insurance companies from declining to offer insurance for pre-existing conditions,12 an element of the federal Affordable Care Act that could be stripped out as part of a court case. The act also creates a workgroup to monitor certain court cases and the enforcement of the Affordable Care Act. Governor Hogan signed this legislation into law on May 13, 2019.
Jon Bombardieri is a Partner at CLB Partners, LLC, in Trenton, New Jersey. 1
Alzheimer’s Association. (2019). 2019 Alzheimer’s disease facts and figures. Alzheimer’s Dementia, 15(3), 321—387.
Vainieri Huttle, V., Mukherji, R., & Downey, J. (2018, February 1). Assembly, No. 2365; State of New Jersey 218th Legislature. www.njleg. state.nj.us/2018/Bills/A2500/2365_R1.HTM.
New Jersey Office of Legislative Services. (2017). Vainieri Huttle & Mukherji bill to improve hospital oversight of dementia & Alzheimer’s patients clears assembly panel. New Jersey Assembly Democrats. www.assemblydems.com/vainieri-huttle-mukherjibill-to-improve-hospital-oversight-of-dementia-alzheimerspatients-clears-assembly-panel.
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New Jersey Office of Legislative Services. (2019). Cody-Rice bill to improve care for those with Alzheimer’s disease advances. New Jersey Senate Democrats. www.njsendems.org/codey-ricebill-to-improve-care-for-those-with-alzheimers-diseaseadvances.
Singleton, T., & Madden, F. H. (2019, May 13). Senate Concurrent Resolution No. 164; State of New Jersey 218th Legislature. www.njleg. state.nj.us/2018/Bills/SCR/164_I1.HTM.
General Assembly of Connecticut. (2019, January). Raised Bill No. 827. An Act Concerning Alzheimer’s Disease and Dementia Training and Best Practices. www.cga.ct.gov/2019/TOB/s/pdf/2019SB-00827R00-SB.PDF.
General Assembly of Pennsylvania. (2019, May 14). House Resolution 193. www.legis.state.pa.us/CFDOCS/Legis/PN/ Public/btCheck.cfm?txtType=PDF&sessYr=2019&sessInd= 0&billBody=H&billTyp=R&billNbr=0193&pn=1814.
Shekarchi, K. J., Noret, T. E., McNamara, J. M., & Jackson, J. B. (2019, January). H 5178; General Assembly State of Rhode Island. http://webserver.rilin.state.ri.us/billtext19/housetext19/h5178. pdf.
Byrd, A. (2019, February 8). House Resolution No. 13; West Virginia Legislature. www.wvlegislature.gov/Bill_Text_HTML/2019_ sessions/RS/bills/hr13%20intr.htm.
Bonds, A., Gray, V., Evans, J., & Todd, B. T. (n.d.). Dementia Training for Direct Care Workers Act of 2019; Council of the District of Columbia. http://lims.dccouncil.us/Download/42719/B23-0325Introduction.pdf.
Johnson, K., & Lockman. (n.d.). House Bill No. 169; Delaware House of Representatives 150th General Assembly. http://legis.delaware.gov/json/BillDetail/ GenerateHtmlDocument?legislationId=47550& legislationTypeId=1&docTypeId=2&legislationName=HB169.
Pendergrass, S., & Feldman, B. J. (2019). House Bill 0697; State of Maryland General Assembly. http://mgaleg.maryland.gov/ webmga/frmMain.aspx?id=HB0697&stab=01&pid=billpage& tab=subject3&ys=2019RS.
Alzheimer’s: Ethical Questions and Answers from Diagnosis to Dying
By Stephen G. Post, PhD
Since 1990, Dr. Stephen G. Post has worked with deeply forgetful people and their caregivers across all 50 U.S. states and Canadian provinces through community dialogues, focus groups and ethics panels, organized in collaboration with local Alzheimer’s Association chapters and coordinated through the national Association’s policy division in Washington, DC.
As members of the healthcare community, we are all aware that Alzheimer’s is a complex disease. Its diagnosis, treatment and prognosis vary with each individual who comes before us with a notebook full of questions that we cannot answer with any degree of certainty. The questions continue to come from the caregivers who are struggling to understand their undefined, confusing and often overwhelming role. Thrown into this mix is the physician’s obligation to consider the disease from a bioethical standpoint. Relying on the work of the Alzheimer’s Association National Ethics Committee (on which this author served), this article seeks to give healthcare providers guidance on how to care for patients with Alzheimer’s in an ethical manner, respecting patients’ dignity, rights and wishes— even when they can no longer advocate for themselves.
ETHICALLY COMMUNICATING THE DIAGNOSIS OF DEMENTIA
Diagnostic truth telling in the context of dementia should be handled as it is in other medical contexts—be as truthful as information permits, while attending to the patient’s need for social, emotional, spiritual and practical support. Compassionate diagnostic disclosure is a moral act of respect for persons, an opportunity to strengthen resilience and build community, and a necessary, practical step in planning for the future. Breaking the news supportively takes a lot of care and attention, but it can be done, with empathy–and some practice. Although almost everyone agrees that compassionate honesty is the best policy, there are disagreements about the optimal kinds of emotional and relational support, about precise wording and timing, and about whether to inform the patient and the family or just the patient. When the diagnosis is Alzheimer’s disease (AD), excuses for deception and nondisclosure are simply not valid. The most common excuses are anxiety, culture and lack of objectivity. Anxiety. The idea of denying the truth to protect a patient from anxiety underestimates the remarkable human capacity to deal creatively and resiliently with the implications of serious diagnoses. (One exception is when addressing a patient with clinically significant depression, where a more cautious and gradual approach to disclosure is advisable.) In most cases, knowing about a diagnosis, and its emotional challenges for the patient, mobilizes family and community to provide the care and acceptance without which the patient will experience further isolation. Culture. Physicians may encounter patients from cultures where nondisclosure to the patient is still the model, and families still operate in a highly protective manner. The physician will clearly want to take this into consideration as a matter of cultural sensitivity, but no physician should ever presume to withhold information, unless the patient
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specifically requests that the physician do so. Lack of objectivity. The syndrome called dementia is composed of a cluster of symptoms, but the core feature of dementia is a decline in cognitive abilities that causes significant dysfunction. Not presenting reasonably clear diagnostic information disenfranchises the person experiencing an illness—who usually is well aware of some losses—and creates a climate of distrust that will ultimately serve no good purpose. As a result of this communication process, the affected person and the family should come to understand six facts: 1 The loss of memory is not normal, but results from changes in the brain. 2 Expectations for the future are uncertain, but in general, there will be further loss of memory. 3 Although the disease cannot be cured, many of its effects can be treated. 4 Having Alzheimer’s does not mean that the patient cannot enjoy many experiences and retain his or her selfhood. 5 Support groups, such as those sponsored by the Alzheimer’s Association, are available and effective. 6 The healthcare team will be available to provide assistance throughout the disease process, although the patient’s quality of life will really depend almost entirely on nonmedical factors.1 By informing the person of the diagnosis in a timely manner whenever possible, we enable him or her to prepare advance directives for healthcare decisions to be implemented upon eventual incompetence. An added advantage is that the person may be able to volunteer for certain types of Alzheimer’s research. Most important, disclosure permits the person with dementia to participate in counseling and support group interventions, thus helping to alleviate anger, self-blame, fear and depression.2
TREATMENT WITH MEDICATION*
Researchers have found Alzheimer’s one of the toughest diseases to decipher—and even tougher to treat. So, what are the ethics involved when a physician is asked, “What medicine can I take to treat this?” On a scale of 1 to 10, if insulin rates a 9 as an effective drug for treating diabetes, medications for Alzheimer’s rate very roughly a 1. This is the cause of the dilemma.
Some doctors write prescriptions for the primary available Alzheimer’s medications (acetylcholinesterase inhibitors or the N-methyl-D-aspartate [NMDA] receptor antagonist,
*Information in this section is provided with the assistance of Gregg Cantor, MD, Stony Brook University Medical Center.
memantine), but they are responding to the American tendency to place hope in magic bullets. Other doctors think that existing drug treatments are ineffective, at best. It is reasonable to give drugs a try, but it is also reasonable to avoid them or to stop taking them at some point because they have side effects and cost money, while providing few, if any, demonstrable benefits. The most common side effects of acetylcholinesterase inhibitors include insomnia, nausea, diarrhea, dizziness, falls and infection in more than 10 percent of those who take them. Memantine has been shown to cause dizziness, confusion, hallucinations, diarrhea, infection and urinary incontinence in 1 to 10 percent of patients.3 These medications can also impose a heavy financial burden on patients. Generic acetylcholinesterase inhibitors cost, on average, $200 to $250 per month, while memantine can cost an average of $450 to $500 per month.4 There is hope that sometime in the future an effective drug that slows or halts the progression of AD will be found. In the meantime, drugs to help with agitation, combativeness, hallucinations and aggression during the moderate stage of the disease are available. However, such problems often can—and ideally will—be managed by improvements in the patient’s environmental, communicative and social situation. Decisions about the medications currently available to treat AD are ethically and financially complex. Their efficacy is limited, while the affected individual remains on the inevitable downward trajectory of irreversible progressive dementia. Nonchemical interventions focused on emotional, relational and spiritual well-being are often cheaper and more effective.
TREATMENT WITH CHEMICAL AND/OR PHYSICAL RESTRAINTS
The non-chemical interventions that offer sound alternatives to medication for patients with Alzheimer’s are often also better alternatives to the chemical and/or physical restraints used to manage behavioral problems. Social, environmental and activity modification, for example, are more desirable than physical restraints, which can result in unnecessary, and frequently hazardous, immobility; for example, people with dementia struggle for freedom and can harm themselves in the process. Strangulation, medical ailments caused by immobility and increased agitation are also among the serious and substantial harms caused by physical restraints.5 Using physical restraints out of concern for the safety of the person with dementia is a significant consideration, especially because for the frail elderly, falls can be very serious. But the potential harms of physical restraints must also be counted as risks to safety. Moreover, physical restraints increase the AD-affected person’s perception
of threat.6 Although safety is important, it does not justify involuntary restraint and the indignity of being tied down. Health professionals need to be attentive to how family caregivers control the behavior of individuals with Alzheimer’s, and should encourage individualized and diverse approaches7 that do not resort to chemical and physical restraints.8 Consider wandering, for example. This behavior is seen in about half of people with dementia.9 Because of various side effects, there is no current drug therapy for wandering that will not also potentially interfere with other valued activities.7 Still, involuntary restraint is unethical and illegal. As much as possible, people with dementia should remain free to wander in areas that are hazard-free and nonthreatening. Caregivers should view wandering as beneficial to the affected individual, and look for creative ways to allow it to occur in a safe, protective environment. They should register with the MedicAlert + Alzheimer’s Association Safe Return program (a nationwide registry of people with Alzheimer’s) to help first responders locate a lost individual. Family caregivers may pressure physicians to “do something” quickly about behaviors that are offensive or frightening and cause emotional stress in the family. Society has come to expect prompt control of such behaviors, even if this requires resorting to chemical means. However, drugs to reduce disturbed behaviors (such as wandering, restlessness and irritability) create ethical issues when used at doses that interfere with a patient’s remaining cognitive function, and cause other side effects. If and when caregivers resort to behaviorcontrolling drugs, they should be used cautiously, and only for specified purposes. If psychoactive drugs are used, the purpose of treatment and the target symptom must be well defined; as few drugs as possible should be used, and they should be administered starting with low doses, increasing dosages slowly and monitoring carefully for side effects.10 Used sparingly in this context, drugs can have the desired therapeutic effects, help to maintain the home-care environment, lighten the burden on caregivers and make the use of physical restraints unnecessary. Thus, when used carefully to attain defined short-term goals, drugs can be highly beneficial,11 making caregiving more manageable, without compromising the person’s quality of life.
ALLOWING A PEACEFUL DEATH
During the course of treatment, whether with medication, restraint or behavior modification strategies, it’s important to remember that deeply forgetful people are always present underneath the chaos or the silence, and they always possess consciousness as they take in the world around them. The fact that their rational processes are disordered or even absent is irrelevant with regard to the
respect they are owed as members of the human family. We need to keep in mind that they can have relatively good days, as well as bad ones, and that this is the only life they have. The Alzheimer’s Association concludes that Alzheimer’s disease in its advanced stage should be defined as a terminal disease, as roughly delineated by such features as the inability to recognize loved ones, to communicate by speech, to ambulate or to maintain bowel and/or bladder control. When Alzheimer’s progresses to this stage, swallowing difficulties and weight loss inevitably emerge. Death can be expected within a year or two, or even sooner, for most patients, regardless of medical efforts.12 One useful consequence of viewing the advanced stage as terminal is that family members will better appreciate the importance of palliative care (pain medication) as an alternative to medical treatments intended to extend the dying process. Palliative Care. All efforts at life extension in this advanced stage create burdens and avoidable suffering for patients who could otherwise live out the remainder of their lives in greater comfort and peace. Cardiopulmonary resuscitation, dialysis, tube-feeding and all other invasive technologies should be avoided. The use of antibiotics usually does not prolong survival, and comfort can be maintained without antibiotic use in patients experiencing infections. Avoiding hospitalization will also decrease the number of persons with advanced Alzheimer’s who receive tube-feeding because many long-term care facilities send residents to hospitals for tube placement, after which they return to the facility. In comparison with assisted oral feeding, however, long-term tube-feeding has no advantages and a number of disadvantages.13 Early discussions of a peaceful death should occur between persons with dementia and their families, guided by information from healthcare professionals on the relative benefits of a palliative care approach. Patients with advanced dementia experience symptoms that are responsive to palliative care, such as constipation and pain, yet healthcare workers often fail to treat these symptoms in a manner that provides relief. Instead, Mitchell and colleagues found that patients with dementia actually have more markers associated with poor quality of nursing home care, such as pressure ulcers, the use of restraints and the use of anti-psychotic medications, than do patients with cancer.14 It is possible that in patients with dementia, medication and restraints are used to control agitation that is actually a result of unmanaged pain. Hospice Care. Patients with dementia also benefit from the palliative care provided by hospice programs, which are dramatically increasing their involvement with this population. Nineteen percent of individuals with dementia receive hospice care in a given year, a higher percentage
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than for other chronic conditions.15 Dementia was the third most common primary diagnosis overall for Medicare beneficiaries admitted to hospice, with cancer the most common primary diagnosis.16 Additionally, those enrolled in hospice care are less likely to be hospitalized in the last 30 days of life17 and more likely to receive regular treatment for pain.18 Sadly, at the last assessment before death, only 50 percent of patients with dementia had an advance directive to limit invasive care, compared to 85 percent of patients with cancer. This discrepancy is reflected in the fact that two decades ago five times more patients with dementia than patients with cancer were subjected to an invasive treatment, such as tube-feeding, in part because professionals, the family and the person with Alzheimer’s disease do not clearly acknowledge that AD is a terminal illness,19 and do not prepare advance directives. This is largely still the case.
PLANNING FOR A PEACEFUL DEATH WITH ADVANCE DIRECTIVES
When Alzheimer’s has advanced to its late stages, it is impossible to ask the patient what he or she would like to do about treatment options. That is why early diagnostic truth-telling is the necessary starting point for an ethics of “precedent autonomy.” This allows loved ones to make decisions for an incompetent person based on what that person desired before becoming incompetent. In the early stages of dementia, this can be done by completing advance directives such as a durable power of attorney for healthcare, coupled with a living will or some other specific indication of the patient’s material wishes with regard to end-of-life care. Unless the person knows the probable diagnosis in a timely way while still competent to file such legal instruments, however, the risk that he or she will be subjected to burdensome medical technologies is increased. Unfortunately, when many people reach the end of life, they have not prepared an advance directive; they have not created a durable power of attorney to deal with healthcare decisions, and their family members feel guilty if they don’t summon all the marvels of modern medical technology to treat them. To ensure that individuals’ wishes might be carried out in the final stages of the disease, preventing discomfort and a loss of dignity, patients with Alzheimer’s need to do both—leave advance directives and assign someone durable power of attorney. This should make it unnecessary for those diagnosed with AD to later suffer a loss of dignity at the hands of technology. In almost all cases, judgments of an individual’s capacity to make medical decisions in a healthcare setting can be arrived at without the need for legal proceedings. In medical contexts, capacity, whether clinical or nonclinical,
includes the ability to understand relevant options and their consequences in light of one’s own values. In the standard definition of a patient’s capacity for medical treatment decision making in a living will with durable power of attorney, a patient must be able to do the following: 1 appreciate that he or she has a choice; 2 understand the medical situation and prognosis, the nature of the recommended care, the risks and benefits of each alternative and the likely consequences; and 3 maintain sufficient decisional stability over time, in contrast to the profound vacillation that indicates an absence of capacity.20 It is important to plan for the global incompetency of advanced dementia through the use of advance directives: Estate wills, living wills and durable powers of attorney for healthcare decisions are necessary. The precedent self that is fully intact before the clinical manifestation of dementia has the legal right and authority to dictate levels of medical care for the severely demented self.
Nothing about Alzheimer’s disease is easy. Not the diagnosis, not the treatment and certainly not the ethical obligations that healthcare providers owe to patients and caregivers. However, the guidelines established by the Alzheimer’s Association National Ethics Committee make the task a bit easier, and more importantly, make it more likely that the dignity and the rights of our patients and their caregivers will be respected.
Johnson, S. H. (1990). The fear of liability and the use of restraints in nursing homes. Law, Medicine and Health Care: Law and Aging, 18(3), 263–273.
Patel, V., & Hope, T. (1993). Aggressive behavior in elderly people with dementia: A review. International Journal of Geriatric Psychiatry, 457-472. https://act.alz.org/site/SPageServer/?pagename=walk_homepage. Teri, L., Rabins, P., Whitehouse, P. J., Berg, L., Reisberg, B., Sunderland, T., . . . & Phelps, C. (1992). Management of behavior disturbance in Alzheimer’s disease: Current knowledge and future directions. Alzheimer Disease and Associated Disorders: An International Journal, 6, 77–88.
Reifler, B. V., Henry, R. S., & Sherrill, K. A. (1992). A national demonstration program on dementia day care centers and respite services: An interim report. Behavior, Health and Aging, 2, 199–206.
Alzheimer’s Association. (2019). Wandering. www.alz.org/help-support/ caregiving/stages-behaviors/wandering.
Martin, R. J., & Whitehouse, P. J. (1990). The clinical care of patients with dementia. In N. L. Mace (Ed.), Dementia Care: Patient, Family, and Community. Baltimore, MD: Johns Hopkins University Press.
Light, E., & Lebowitz, B. D. (Eds.). (1989). Alzheimer’s disease treatment and family stress: Directions for research. Rockville, MD: U.S. Department of Health and Human Services.
Taylor, C. A., Greenlund, S. F., McGuire, L. C., Lu, H., & Croft, J. B. (2017, May 26). Deaths from Alzheimer’s disease – United States, 1999-2014. Morbidity and Mortality Weekly Report CDC, 66(20), 521–525.
Alzheimer’s Disease Association. (2001). Ethical issues in Alzheimer’s disease. Chicago, IL: Author.
Mitchell, S. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321–326.
Unpublished tabulations based on data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014. Prepared under contract by Avalere Health, January 2016.
U.S. Centers for Medicare & Medicaid Services. (2018, June 27 [updated]). Medicare provider utilization and payment data: Hospice providers. www.cms.gov/research-statistics-data-and-systems/ statistics-trends-and-reports/medicare-provider-charge-data/hospice. html.
Stephen G. Post, PhD, is the best-selling author of Why Good Things Happen to Good People: How to Live a Longer, Happier, Healthier Life by the Simple Act of Giving. His book The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying was designated a “medical classic of the century” by the British Medical Journal. Post is one of three recipients of the Alzheimer’s Association Distinguished Service Award. 1
Foley, J. M., & S. G. Post. (1994). Ethical issues in dementia. In J. C. Morris (Ed.), Handbook of Dementing Illnesses. New York, NY: Marcel Dekker.
Lipkowitz, R. (1988). Services for Alzheimer patients and their families. In M. K. Aronson (Ed.), Understanding Alzheimer’s Disease. New York, NY: Charles Scribner’s Sons.
Howard, R., McShane, R., Lindesay, D. M., Ritchie, C., Baldwin, M. R. C., Barber, R., . . . Phillips, P. (2012, March 8). Donepezil and memantine for moderate-to-severe Alzheimer’s disease. New England Journal of Medicine. www.nejm.org/doi/full/10.1056/nejmoa1106668.
Memantine: Drug information. (2018). UpToDate. www.uptodate.com/ contents/memantine-drug-information?search=memantine&sourc e=search_result&selectedTitle=1~37&usage_type=default&display_ rank=1#F192451.
Miller, S. C., Gozalo, P., & Mor, V. (2001). Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine, 11(1), 38–44.
Kiely, D. K., Givens, J. L., Shaffer, M. L., Teno, J. M., & Mitchell, S. L. (2010). Hospice use and outcomes in nursing home residents with advanced dementia. Journal of the American Geriatric Society, 58(12), 2284–2291; Miller, S .C., Mor, V., Wu, N., Gozalo, P., & Lapane, K. Does receipt of hospice care in nursing homes improve management of pain at the end of life? Journal of American Geriatric Society, 50(3), 507–515.
McNamara, E., & Kennedy, N. (2001). Tube feeding patients with advanced dementia: An ethical dilemma. Proceedings of the Nutrition Society, 60, 179–185.
Lo, B. (1990). Assessing decision-making capacity. Law, Medicine and Health Care: Law and Aging, 18(3), 193–201.
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Living with Early-Stage Alzheimerâ€™s Disease:
A Personal Perspective from Tom Doyle Interviewed by Catherine E. Williams and Janet S. Puro, MPH, MBA
Tom Doyle (on left), with his husband, Levi.
MDADVISOR | Summer 2019
Tom Doyle was diagnosed with Alzheimer’s disease and secondary Parkinsonism in 2016 at age 63. Before his diagnosis, Tom served as a Professor of Education at Concordia University Irvine and National University Los Angeles until the disease prompted his early retirement. Tom recently served a one-year term as a member of the Alzheimer’s Association National Early-Stage Advisory Group, a national group of advisors who give a voice to those living with the disease to help others understand their challenges and their perspectives. He currently serves on the Board of Directors of the Alzheimer’s Association as one of their early-stage members. Tom wants to be seen as an individual who has the disease but is not defined by the disease. He hopes to raise awareness and communicate that people living with Alzheimer’s and other dementias are productive and vibrant, with full lives. He also wants to stress the benefit of early detection and diagnosis. Tom recently responded to questions posed by MDAdvisor, sharing his own personal experiences.
MDADVISOR: WHAT WAS IT LIKE TO RECEIVE A DIAGNOSIS OF EARLY-ONSET ALZHEIMER’S DISEASE?
Doyle: Actually, the diagnosis, for me, was very helpful. I was a professor for 25 years, and I was having trouble in the classroom. I couldn’t remember my lectures, and I couldn’t remember or answer questions that students would ask. I had lost the ability to grade papers efficiently, and was really struggling. I didn’t know what was wrong.
At the time, I was already seeing a neurologist for my Parkinson’s, but it was my psychologist who noticed the changes I was experiencing. He noticed my increased level of anxiety that often goes along with dementia, and he became concerned with my memory issues and the level of difficulty I was having at the university. He was the one who first suggested that I talk to my neurologist about my memory problem. Of course, my husband was also noticing similar changes at home, and was concerned about my memory. If the psychologist hadn’t suggested it, I would’ve talked to my neurologist about it anyway. I was given a five-minute memory test, and my neurologist was able to tell at that point that I was having some cognitive issues. Receiving an early diagnosis was excellent, because the doctors were able to treat me emotionally and physically. I received medications and counseling, and I worked with a social worker who also works with my care partner and my family. All of those resources became available to me. Identifying the necessary resources is so important for those of us who are living with the disease. We need the right help to be able to live a fulfilling and wonderful life even as we struggle with the effects of the dementia.
MDADVISOR: OFTEN, PATIENTS WITH ALZHEIMER’S, ESPECIALLY THOSE WITH EARLY ONSET OF THE DISEASE, DO NOT GET A CLEAR DIAGNOSIS RIGHT AWAY. SOMETIMES, DOCTORS ARE HESITANT TO
GIVE A DIAGNOSIS OF ALZHEIMER’S DISEASE, IN LARGE PART BECAUSE THERE IS NO CURE. WHAT IS YOUR FEELING ABOUT THIS? Doyle: I have had the great opportunity to speak all over the country and work with different groups, including medical students, over the past year. I often hear of people who were not diagnosed early, or weren’t provided a diagnosis by their physicians, and the truth is that people want to know the truth in most instances. There are so many places to receive help, and those resources are not available without a diagnosis. It is so much better to have the medical care and attention that you need, versus not having a diagnosis and then ending up in a crisis situation.
“Identifying the necessary resources is so important for those of us who are living with the disease. We need the right help to be able to live a fulfilling and wonderful life even as we struggle with the effects of the dementia.” In addition, without an official diagnosis, people cannot participate in clinical trials. We know that the major advancements toward slowing or curing this disease are going to come out of a clinical trial, so it is really important that we have participation. I am in a clinical trial right now that is not only helpful for me but helpful for the researchers, so that we continue to work diligently to end this devastating disease.
MDADVISOR: WHAT ABOUT THOSE INSTANCES WHERE A FAMILY MEMBER NOTICES MEMORY ISSUES, BUT THE PERSON MAY BE RELUCTANT OR FEARFUL TO BRING THEM UP TO HIS OR HER PHYSICIAN?
Doyle: Certainly these are not easy issues for families to talk about. Sometimes, family members see something of concern, and they choose not to talk about it, either because they think that person might just be having a bad day, or they’re getting a little bit older, and this is normal behavior, or maybe they are just scared about what the
answer might be. A recent Alzheimer’s Association survey of Americans found that 89 percent said that if they were showing signs of cognitive concerns, they would want somebody to tell them. However, three out of four care partners admitted it is a difficult conversation to have. The bottom line is that this is an important conversation to have because it is often the first step that leads someone to the doctor’s office. It could be that the cognitive concern is tied to some other more treatable condition. It doesn’t necessarily mean the person has dementia or Alzheimer’s, but unless you have that conversation, and say, “I’m seeing some things that are concerning to me; let’s go to the doctor and get it checked out,” then you cannot know for sure. And if the problem lingers too long, you could be putting the person in a dangerous situation. The other side to this issue is that we know that primary care physicians are not routinely addressing the issue of memory. There are many senior citizens out there who are concerned about memory loss, but are reluctant to say anything. It is also up to primary care physicians to become involved in the issue of memory care for older adults, and to screen senior citizens for cognitive issues on a regular basis.
MDADVISOR: WHAT ADVICE DO YOU HAVE FOR SOMEBODY WHO RECENTLY RECEIVED A DIAGNOSIS OF ALZHEIMER’S DISEASE?
Doyle: I think one of the first steps that I took because my doctor suggested it—and I’m so glad he did—was to contact my state chapter of the Alzheimer’s Association. It was there that I found support groups for me and my husband as my care partner. There has been much sharing of experiences and insights with people who are going through the same kinds of difficulties that we are. We can also empathize with each other, because our stories are so similar in so many ways. I would suggest that others get in contact with their state chapter as soon as they can. The Alzheimer’s Association also offers a 24-7 Helpline (800-272-3900) to help families facing this devastating disease, and that’s a great place to get information and support.
MDADVISOR: WHAT WOULD YOU SAY IS THE BIGGEST MISCONCEPTION ABOUT PEOPLE LIVING WITH EARLY-ONSET ALZHEIMER’S DISEASE?
Doyle: One thing I hear from many people, especially those with whom I have limited interaction, is: “You don’t look like you have Alzheimer’s.” For example, I was at the Early-Stage Advisory Group meeting last year in Chicago, and I sat down in a restaurant to have lunch. The waitress asked me why I was there, and I told her I was there for the National Alzheimer’s Early-Stage Advisory Group. She said, “Do you know someone who has Alzheimer’s?” I said, “Me.” She looked at me and said, “You don’t look like you have
MDADVISOR | Summer 2019
Alzheimer’s.” I said, “Well, good, but I don’t really know what Alzheimer’s looks like.” When someone pictures a person with Alzheimer’s disease, they tend to think about the end stages of the disease, and immediately think of someone bedridden and unable to communicate. However, the reality is, especially for individuals living with early-onset Alzheimer’s, you are dealing with people who are mostly functional. They may need help with some things now and then, but they can still live a quality life. When I told my family that I had dementia, their first reaction was fear because my mother died of Alzheimer’s. My family remembered what it was like for my mother—not so much at the beginning, but they remembered distinctly what it was like toward the end before she died. Once they had the opportunity to digest my diagnosis, they certainly stepped up to provide an incredible amount of support. They knew the kinds of challenges that I was facing in the early stage, as well as the ones that I’m going to face later on as this disease progresses.
MDADVISOR: WHO ARE ALL OF THE MEMBERS WHO MAKE UP YOUR HEALTHCARE TEAM, AND HOW IS YOUR CARE COORDINATED AMONG THOSE PROVIDERS?
Doyle: My healthcare team consists of my primary care physician, a movement specialist neurologist (because I also have Parkinson’s), my memory specialist at the Cognitive Impairment and Alzheimer’s Center and a social worker. All of my providers are constantly interacting with each other, and my care is coordinated by my primary care physician. It is so important that my doctors are communicating with each other, so they know which medications I am taking and what kinds of treatments I am receiving. Everyone is on the same page with a coordinated plan of care. I couldn’t ask for a better medical team.
MDADVISOR: WHERE CAN PEOPLE FIND RESOURCES FOR CAREGIVERS AND FAMILY MEMBERS?
Doyle: My husband, Levi, gets assistance from the Veterans Administration, which offers support groups for care partners to help them to interact with each other and share their experiences. My husband is also very involved with my doctors, and accompanies me to all my doctor’s visits so that he can be made aware of the issues that I’m dealing with. He also belongs to an online group of care partners that he interacts with through Facebook, and they provide each other support and encouragement. Really, he gets support from all over. Early on, I knew that Levi would need additional support as my disease progressed. So three years ago, we pulled up our roots in California and moved to Illinois, where I grew up, so I could be closer to the place where my two brothers and my father live along
with their families. Now he receives support from my brothers, sisters-in-law, nieces, nephews and my own children. My brothers are an integral part of my care team, which is so important because this is very much a family disease. It is also important that my husband is able to get away from me sometimes. Levi is an Uber driver, so today I had a healthcare professional come to my house who takes care of the cleaning, and helps me walk the dog and does the laundry so that Levi can work. I have someone come to assist me two days a week, and that’s provided by social services.
MDADVISOR: WHAT HAS YOUR INVOLVEMENT WITH THE ALZHEIMER’S ASSOCIATION MEANT TO YOU?
Doyle: My involvement with the Early-Stage Advisory Group of the Alzheimer’s Association came through the Illinois chapter, and it has been just an incredible experience. In addition to weighing in on the various programs that the Alzheimer’s Association is considering implementing, I have also spent a great deal of time talking to various audiences around the country about my experiences and my challenges—hoping this gives others guidance for how to live your best life in the wake of a devastating diagnosis.
experience of my life. I was able to use the skills that I gained as a professor to share my story with people all over the country. I also was nominated to serve on the Board of Directors of the National Alzheimer’s Association as one of their early-stage members. I began a two-year term in January, and I enjoy that experience immensely.
MDADVISOR: HOW HOPEFUL ARE YOU THAT SCIENTISTS WILL FIND A CURE FOR ALZHEIMER’S DISEASE?
Doyle: My ultimate hope is that we find a cure for Alzheimer’s disease, or at least find a way to detect the disease early on so that it can be treated before it ever rears its ugly head. That is my hope, and I really think it’s going to happen. The research is promising. I hope that in my lifetime I can see a cure. I don’t know if it’s going to happen, but there are exciting things happening with the research. I think we are getting close.
Catherine E. Williams is Senior Vice President, Business Development and Corporate Secretary, and Janet S. Puro, MPH, MBA, is Vice President of Business Development and Corporate Communications, at MDAdvantage Insurance Company.
One of my most interesting speaking engagements was at the Wisconsin chapter of the Alzheimer’s Association. They invited me and Levi to speak to 800 healthcare professionals about what it is like as a gay couple dealing with the disease. I also spoke to a group of financial planners, which may sound like an unusual audience. But as you can imagine, Alzheimer’s is a very expensive disease, and there is great interest from that community in terms of how they can help people plan for such a costly disease. I spoke to 1,200 participants at the Advocacy Forum in Washington, DC, about my story. Levi and I spoke to second-year medical students at the University of Illinois at Chicago, about what it is like living with the disease and being a care partner. I also had the opportunity to speak to the call center staff at the National Alzheimer’s Association to share my story with them, because it is so similar to the stories that they hear on the phone on a regular basis. I was able to put a face and a voice to those experiences that other people are having. When I was a professor, my life had real meaning, purpose and joy. One day I was working and, all of a sudden, the next day I wasn’t. I went through a really dark period, and I felt hopeless and helpless. It wasn’t until I became connected with the Alzheimer’s Association that my life started to have meaning again. I so desperately needed that as I faced the fact that my life is changing, and that I am no longer able to do the things that I used to think were important. This last year has been the greatest
The Latest Advancements in Alzheimer’s Research: An Interview with Rudolph Tanzi, PhD Interviewed By Janet S. Puro, MPH, MBA
Rudy Tanzi, PhD, is the Joseph P. and Rose F. Kennedy Professor of Neurology, Massachusetts General Hospital and Harvard Medical School. Dr. Tanzi co-discovered all three early-onset familial Alzheimer’s disease genes. As the leader of the Cure Alzheimer’s Fund Alzheimer’s Genome Project, he has carried out multiple genome-wide association studies of thousands of Alzheimer’s families, leading to the identification of novel Alzheimer’s disease genes. He also serves as Chair of the Cure Alzheimer’s Fund Research Leadership Group, and is Co-Director of the MGH McCance Center for Brain Health. Dr. Tanzi has also co-authored several best-selling books with Deepak Chopra, MD. The latest is The Healing Self, which provides research-based advice about maintaining a healthy lifestyle. Dr. Tanzi responded to questions posed by MDAdvisor about the latest advancements in the detection and treatment of Alzheimer’s disease.
MDADVISOR: HOW DID YOU GET STARTED IN ALZHEIMER’S RESEARCH?
Tanzi: I got involved with Alzheimer’s through the back door. Back in the early 1980s, researcher Jim Gusella, PhD, and I were the first team to find a disease gene using genetic markers. We found the first DNA markers in the genome, which are now called single nucleotide polymorphisms or SNPs. Now there are probably 70 million known SNPs in the genome, but back then, Jim and I found the first five. We were looking for the Huntington’s gene, and it was like looking for a needle in a haystack. Miraculously, with just five SNPs, we found the Huntington’s gene. That was a significant finding, and the Smithsonian includes it as one of just a handful of milestones on the genetics timeline, starting with Mendel to Hershey and Chase, Watson and Crick, the genetic code and then the finding of that gene, and the Human Genome Project.
MDADVISOR | Summer 2019
I then decided I wanted to map out chromosome 21 to delineate which genes were important for Down syndrome. As a student at Harvard, when I learned that persons with Down syndrome inevitably get Alzheimer’s pathology, I wildly speculated that there would be an Alzheimer’s gene on chromosome 21, and it would encode the gene that makes the plaques. As you might imagine, the head of the neurobiology department told me that was too much speculation in a project for a student who had yet to finish his thesis, but I did it anyway, and the hunch worked out. In the summer of 1986, I discovered the first Alzheimer’s gene, which I named the amyloid precursor protein (or APP), and never looked back. From there, I have discovered many Alzheimer’s genes, put those into model systems and worked on drug discovery to prevent or treat the disease.
MDADVISOR: DO WE KNOW HOW MANY GENES ARE ASSOCIATED WITH ALZHEIMER’S DISEASE?
Tanzi: Originally, we had only four genes, three of which were familial early-onset genes that contain more than 200 mutations, and guaranteed the disease by age 60. I was involved with finding all three of those genes. APOE was the fourth one, and it is a common risk factor for late-onset Alzheimer’s disease. All four genes suggested (and still indicate) that amyloid is the beginning of Alzheimer’s disease, which is why there has been such a preponderance of studies and trials focused on amyloid. In 2008, my lab performed the first family-based genomewide association study (GWAS). This was funded by the Cure Alzheimer’s Fund, an organization that also started
the Alzheimer’s Genome Project that I still direct today, going on 15 years. At that time, my lab found two genes. One was CD33, which now is one of the biggest targets in the drug industry for Alzheimer’s. That is because, as we found in 2013, CD33 is the gene that turns on neuroinflammation. We also found that the spinocerebellar ataxia 1 gene (the SCA1 gene), which codes for a protein called ataxin-1, is an Alzheimer’s gene. We recently published a significant paper in Cell Press showing how that gene controls amyloid data production in the brain. It may explain why patients with spinocerebellar ataxia later suffer from memory issues and dementia. After that, many other genes were discovered. At last count, we have the four original genes, plus 29 genes confirmed in GWASs, and then two more have been discovered since then. That brings the total number close to three dozen genes. A third of those genes point us to neuroinflammation, including CD33, TREM2 and others. This neuroinflammatory focus is strongly supported by genetics, just like the original amyloid hypothesis is supported by genetics.
MDADVISOR: WHAT DO WE KNOW ABOUT THE GENETICS OF ALZHEIMER’S DISEASE?
Tanzi: We know that early-onset familial cases (under age 60) constitute approximately 5 percent of cases. The genes involved tend to be dominant and fully penetrant, meaning they guarantee the disease. Ninety-five percent of Alzheimer’s involves a mix of late-onset risk factors, usually including APOE4. The APOE4 variant is present in about 20 percent of the population at large, and 60 to 70 percent of Alzheimer’s cases. APOE4 is directly associated with amyloid as well, but there are other risk factors involved. Some of them increase your risk, and some of them decrease your risk. We find almost equal numbers of protective genetic variants and detrimental or deleterious risk-conferring variants. The rule of thumb is that the earlier the age of onset in your family, the stronger the role of genetics. I think it is safe to say that in 95 percent of cases where we find APOE4 or one of these other approximately 30 late-onset genes, there is increased risk, but that doesn’t guarantee the disease, at least not in the span of a normal lifetime. It could be that if we all live to be 120 years old, some of these variants with partial penetrants may become fully penetrant. Perhaps they just don’t have enough time to cause disease within a normal age span.
MDADVISOR: WHY HAVE RESEARCHERS NOT BEEN MORE SUCCESSFUL IN DEVELOPING DRUGS TO CURE OR EASE THE SYMPTOMS OF ALZHEIMER’S DISEASE?
Tanzi: The reason we have failed so far is that the first genes we found pointed us in the direction of amyloid. In the Alzheimer’s brain, abnormal levels of amyloid, a
naturally occurring protein, clump together to form plaques that collect between neurons, and disrupt cell function. Those genes we identified still continue to guarantee that amyloid triggers Alzheimer’s disease, but now we know from imaging studies over the last decade that amyloid plaques come 5, 10 or even 15 years before symptoms. Biogen gambled that their newest amyloid failure would work if they treated very early-stage patients, but the bottom line is, if you are having symptoms of this disease, your brain has already degenerated to the point of dysfunction. We also know that with Alzheimer’s disease, the amyloid plaques cause neurofibrillary tangles, which are abnormal accumulations of a protein called tau, that collect inside neurons. There are still companies gambling that hitting tangles will work. I say give it a shot, but I think that targeting tangles also occurs too late in the disease process. Most researchers now agree that it is too late to target amyloid plaques or tangles in patients who already have symptoms, expecting to make them cognitively better. We know that, just as with many other diseases, you have to take those proactive measures much earlier to make an impact. With diabetes, we don’t wait until the pancreas degenerates to treat the disease. We test glucose levels, and treat with insulin. In heart disease, we do not wait for a myocardial infarction or congestive heart failure to occur before we treat the disease. We look for cholesterol and evidence of coronary artery disease, and begin proactive treatment as needed. I could say the same thing about cancer. But that is what we are doing with patients fully symptomatic with Alzheimer’s disease. The elephant in the room is that we don’t diagnose Alzheimer’s until the brain has degenerated to the point of dysfunction.
MDADVISOR: WHAT PROGRESS ARE WE MAKING IN IDENTIFYING ALZHEIMER’S DISEASE IN PATIENTS BEFORE THEY BECOME SYMPTOMATIC?
Tanzi: While hitting amyloid and tangles may not work with symptomatic patients, it may work with early prediction. The future for our children and grandchildren will be that by some age, whether it be 40 or 50 or even earlier, if they have a family history of early-onset Alzheimer’s disease, they will be tested for pathology in their brain, such as plaques and tangles, decades before their symptoms appear. We can test them with brain imaging, and very soon, we will be able to perform a simple blood test for amyloid. In the future, once a person shows early indications of Alzheimer’s disease, he or she will start taking medications. Early detection and early intervention have been the mantra of Cure Alzheimer’s Fund since it started 15 years ago, and the mantra holds up even more so today.
MDADVISOR: WHAT PROGRESS ARE WE MAKING IN REDUCING THE NEUROINFLAMMATION THAT IS PRESENT IN SYMPTOMATIC PATIENTS WITH ALZHEIMER’S DISEASE? Tanzi: There is hope that in the future we will be treating symptomatic patients with drugs or therapies that hit neuroinflammation, because that is what is killing most of the nerve cells once plaques and tangles initiate the disease. Plaques and tangles are killing only about one tenth to one one-hundredth of the neurons that neuroinflammation is killing. That is why we are focusing on the Alzheimer’s genes like CD33 and TREM2 that control microglial cell activation and neuroinflammation. We are going to target neuroinflammation with small molecules, immunotherapy or even gene therapy, and we are working on all three of these right now.
There aren’t that many neuroinflammation trials, because this is a relatively new area. Unlike amyloid plaques and tangles that we can detect in the brain with imaging, we don’t have good imaging for neuroinflammation. We have some blood tests for neuroinflammation, but they are not perfect. The research on neuroinflammation is far behind the research on amyloid, because the amyloid genes were found more than 30 years ago, while the neuroinflammatory genes were found about 10 years ago. The big news about neuroinflammation comes from studies of resilience. Every once in a while, the medical community comes across the brain of someone who died in his or her 80s or 90s, and was cognitively fine, with no dementia at all, yet when we look in the brain on autopsy, it is full of plaques and tangles. We are looking at why that happens, and the answer is always the same in these
resilient brains: There is no neuroinflammation. There is no activated microglia, and there are no activated access sites. We are now doing a whole genome sequencing on those brains, and finding mutations that are protective of many of the neuroinflammatory genes involved in Alzheimer’s disease. That research has not yet been published. My team and I have used Alzheimer’s genes and human stem cells to create “Alzheimer’s in a dish”—a three-dimensional human stem cell–derived neural culture system that was the first to recapitulate the two pathological hallmarks of Alzheimer’s disease: plaques and tangles. This model has made drug screening for Alzheimer’s disease considerably faster and more effective. We can do drug discovery a hundred times faster and a hundred times cheaper than doing one drug at a time in mice. We can do these screens in a month, and we can test 96 mini-brains at once. We have tested all of the approved drugs and thousands of natural products. We came up with a handful of drugs that stop neuroinflammation in the presence of plaques and tangles, mimicking the people with resilient brains. One of the drugs that came up was an old asthma drug called cromolyn, a drug that prevents mast cell activation, and is used to treat asthma. We found that cromolyn very effectively converts the microglia out of its pro-inflammatory state, where they are producing cytokines and free radicals, and converts the microglia back to housekeeping cells that will clear amyloid plaque and other debris from the brain, especially during slowwave deep sleep. We worked with a company called AZTherapies* , which was already considering cromolyn for a different reason, and we shared our results with them. I
* Full disclosure: Dr. Tanzi has stock options in AZTherapies, and his lab holds patents on targeting CD33 in Alzheimer’s disease.
MDADVISOR | Summer 2019
administration, that funding is now up to over two billion. We could use more, but it is much better than where we were. There are also foundations that fund the research. I think no foundation has had a larger impact than the Cure Alzheimer’s Fund, whose projects have been published around the world in significant scientific journals. If you look at the $20 million that this foundation spends each year, every dollar in to Cure Alzheimer’s Fund is a dollar out, because all donations fund research. There are other Alzheimer’s foundations that raise more money, but don’t necessarily give more to research because of overhead. There are also other organizations that fund specific initiatives for Alzheimer’s disease, such as the Alzheimer’s Association, which is focused on advocacy, and reaching out to families and patients, and providing education. Each foundation has its niche. The Alzheimer’s Drug Discovery Foundation (ADDF) that Dr. Howard Fillit runs in New York mainly funds new projects going from academia to biotech seed funding, so it fills that niche.
am now the head of their Scientific Advisory Board. The company is nearly finished enrolling a 600-patient phase III clinical trial, testing a drug combination that includes cromolyn plus ibuprofen. The trial is 72 weeks long, and the participants have Alzheimer’s disease at a mild to moderate level. I believe more than 200 patients have already finished the trial. We are looking forward to the results, especially because this is the first trial to really target neuroinflammation itself. My lab is also doing gene therapy. We are developing antisense oligonucleotides (ASOs) and gene therapy using viral vectors to inhibit CD33. We are also developing antibodies. There are also a few other companies doing research on neuroinflammation. Alector is using immunotherapy or small molecules to either turn off CD33 (which turns on microglial neuroinflammation) or activate TREM2 (which turns off microglial neuroinflammation). Denali Therapeutics is trying to reduce neuroinflammation by hitting something called RIPK1 (a brain-penetrant small molecule inhibitor of receptor-interacting serine/ threonine-protein kinase 1). Green Valley, a company in China, is looking at using a natural product to target the gut microbiome as a way to hit neuroinflammation, and I believe they are going to be announcing some results at some point soon.
MDADVISOR: WHO ARE THE BIG FUNDERS OF RESEARCH FOR ALZHEIMER’S DISEASE?
Tanzi: The National Institutes of Health (NIH) is the number one funder of Alzheimer’s research. Up until a few years ago, the NIH was putting only half a billion dollars a year into Alzheimer’s research, but thanks to the efforts of many members of Congress, beginning during the Obama
MDADVISOR: ARE THERE ANY OTHER PROMISING NEW AREAS OF ALZHEIMER’S RESEARCH?
Tanzi: The newest thing in the field is the role of microbes. We have shown that amyloid is not just junk in the brain. We found that amyloid actually is formed in the brain to protect it against infection from viruses, bacteria and microbes. There is a growing awareness that microbes and viruses play a role in Alzheimer’s development, by triggering amyloid deposition as a protective mechanism, which then triggers the disease. That research also is being funded by Cure Alzheimer’s Fund.
MDADVISOR: WHAT CAN PHYSICIANS DO TO ADVOCATE FOR THEIR PATIENTS WHEN IT COMES TO ALZHEIMER’S DISEASE?
Tanzi: Physicians should make sure they are keeping abreast of the latest research. I think Alzforum (www. alzforum.org) does a great job in terms of instructing the public about research, and about current clinical trials. They are probably the best go-to source. The Cure Alzheimer’s Fund website (https://curealz.org) also has a lot of information. Beyond that, physicians should urge their older patients who do not yet show signs of Alzheimer’s to do what they need to do to protect their brain. That includes getting enough sleep, eating a Mediterranean diet and a high-fiber diet, exercising at least a half hour a day, even if just a walk, and continuing to learn new things. I really think doctors should emphasize lifestyle interventions in their older patients to help stave off Alzheimer’s before it hits.
Janet S. Puro, MPH, MBA, is Vice President of Business Development and Corporate Communications at MDAdvantage Insurance Company.
Working to End the HIV Epidemic By Assistant Commissioner Christopher Menschner
Great strides have been made in reducing the incidence of HIV in New Jersey, but there is still much work to be done. There are more than 37,000 individuals living with HIV or AIDS,1 and although the number of new diagnoses is declining, the healthcare community must continue the fight against the spread of this disease. On World AIDS Day in December 2018, the Murphy administration announced its commitment to end the HIV epidemic in New Jersey by 2025,2 and directed the New Jersey Department of Health to lead the state’s “End the Epidemic” efforts. The New Jersey Taskforce to End the HIV Epidemic was quickly formed, and is made up of diverse volunteers from the HIV/AIDS community: clinical and community-based service providers, advocates, educators, researchers, Health Department staff and members of the state’s various HIV/AIDS planning groups. The Taskforce has outlined three overarching goals to be accomplished by 2025: 1) reduce the number of new HIV infections by 75 percent, 2) ensure that 100 percent of those living with HIV/AIDS know their status and 3) ensure that 90 percent of persons diagnosed with HIV/AIDS are virally suppressed. Physicians and other healthcare providers are critical partners in getting New Jersey to a point where acquiring HIV is a rare occurrence. Prevention. A key step in reducing new infections is ensuring that everyone who is at risk for HIV has access to pre-exposure prophylaxis medication, commonly referred to as PrEP. PrEP is a single pill, taken once daily, which reduces the risk of HIV transmission due to sexual exposure by 90 percent, and reduces the risk of HIV transmission due to injection drug use by 70 percent.3 The Department is working to make PrEP more widely available to those who are at risk. In the past two years, more than 1,240 people were linked to PrEP through the New Jersey PrEP Counselor Program.2 Through the program, a network of PrEP counselors connects individuals with physicians and advanced practice nurses who can prescribe PrEP to those at risk of contracting HIV. Additionally, by the end of the year, all Family Planning League clinics in New Jersey will also offer PrEP counseling. The Department is asking that all healthcare providers assess their patients’ risk for HIV and prescribe PrEP when appropriate. Another biomedical HIV prevention tool available to healthcare providers is post-exposure prophylaxis, or PEP. PEP is a medication regimen that, when initiated within 72 hours of a potential HIV exposure, can prevent transmission of HIV. It is critical that emergency departments and other urgent care settings have PEP available for patients who request it, given the immediate need to address potential HIV exposure.
MDADVISOR | Summer 2019
Treatment. Although PrEP and PEP have been gamechangers in HIV prevention, there has also been a game-changing development in HIV treatment. There is effectively no risk of sexual transmission of HIV when people living with the disease are taking HIV medications as prescribed, and have achieved and maintained an undetectable amount of the virus in the body. This achievement is commonly referred to as Undetectable = Untransmittable, or U=U. The Department has been promoting this message within the state’s healthcare community, and as the first step in the state’s End the Epidemic efforts, has endorsed the Prevention Access Campaign’s U=U campaign. Providers should be sharing the U=U message with persons living with HIV, and should be working with patients to achieve and maintain viral suppression. TRAUMA-INFORMED CARE Maintaining patients in care, and achieving viral suppression, is often much more difficult than it seems. Persons living with HIV often have complex health and social needs—such as a history of trauma, mental health and substance abuse issues or housing instability—all of which make it difficult to consistently maintain a treatment regimen. The provision of trauma-informed care is vital to keeping individuals living with HIV/AIDS in active care. Persons living with HIV/ AIDS, especially those who identify as LGBTQ, experience higher rates of trauma, post-traumatic stress disorder and depression compared with individuals who experience other chronic health conditions.4 Providing traumainformed care requires a paradigm shift, and requires that providers take into account patients’ histories of trauma, and how those experiences impact patients’ ability to remain in care and maintain general stability. It is critical that providers recognize the relationship between trauma and poor health outcomes, and the increased likelihood that persons vulnerable to or living with HIV have experienced trauma. The Department is providing trauma-informed care training to all its HIV/AIDS treatment provider grantees, to ensure that all staff are cognizant of their clients’ experiences, and can respond to them appropriately. The Department asks that all providers begin to consider their patients’ potential histories of trauma, especially those who identify as LGBTQ, and those who are at risk for or living with HIV. Outreach. Although PrEP, PEP and U=U have been monumental advances in HIV prevention and treatment, HIV testing—and making sure that all patients know their status—remains a critical foundational piece of all HIV efforts. Nearly 40 percent of new HIV infections in the United States are transmitted by people who do not know they have the virus. The Centers for Disease Control and Prevention (CDC) recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part
of routine healthcare.5 A key element of achieving the End the HIV Epidemic goal of having 100 percent of individuals living with HIV/AIDS knowing their status is ensuring that all healthcare providers conduct HIV testing according to CDC guidelines. The Department continues to work with partners to promote testing, and link individuals with treatment and HIV medications that are effective in preventing transmission of the virus. In 2017, nearly 80,000 free, confidential rapid HIV tests were administered at more than 170 locations, and more than 6,200 persons living with HIV received medications through the NJ AIDS Drug Distribution Program.2 A resurgence in new HIV infections. Although the number of HIV infections among persons who inject drugs has declined in the state, this population is still very much at risk. The ongoing opioid epidemic is evolving, and the increased presence of fentanyl in our communities is driving a resurgence in new HIV infections among persons who inject drugs. According the Kaiser Health News, although fentanyl is stronger than heroin and more likely to cause an overdose, the effects of fentanyl also wear off much more quickly.6 Therefore, individuals must inject more frequently to achieve the same effect, which increases the likelihood that a person will share syringes, which leads to increased risk of contracting HIV. In response to the opioid epidemic, the Department is investing in the expansion of services at New Jersey’s Harm Reduction Centers (HRCs, formerly called Syringe Access Programs). The Department is using federal funding to increase the Harm Reduction Specialist role at all seven of our state’s HRC sites. Harm Reduction Specialists provide education and counseling on how to use drugs safely, namely, to avoid overdose and the acquisition of HIV, hepatitis and other communicable diseases. In addition to harm reduction education and counseling, HRCs provide a comprehensive suite of services, including, but not limited to, the distribution of clean syringes and naloxone, HIV and sexually transmitted disease (STD) testing and Access to Reproductive Care and HIV (ARCH) nurse services.
Building partnerships. In New Jersey, the rate of newly diagnosed HIV cases has declined 39 percent in nearly a decade due to the longstanding effective collaboration between the Department and many community-based stakeholders around the state. The current efforts to end the epidemic are built on the strong foundation laid by the HIV community. To achieve the end of the HIV epidemic, even stronger commitments and partnerships across the state will be required—particularly within the primary care community. With this cooperative approach, ending the epidemic is within reach. The Department of Health invites all healthcare providers to join us in this critical work. To learn more about the Department’s initiatives, visit: www.state.nj.us/health/hivstdtb/.
Christopher Menschner is Assistant Commissioner, New Jersey Department of Health Division of HIV, STD, and TB Services. 1
New Jersey Department of Health. (n.d). State of New Jersey residents at diagnosis: HIV/AIDS cases reported as of December 31, 2017. NJDOH. www.state.nj.us/health/hivstdtb/documents/stats/hiv/ popgroups/state.pdf.
New Jersey Department of Health. (2018, November 30). Murphy administration works to end the AIDS epidemic in New Jersey. NJ Health. www.nj.gov/health/news/2018/approved/20181130a.shtml.
Centers for Disease Control and Prevention. (2019, May 28 [updated]). PrEP. HIV/AIDS. www.cdc.gov/hiv/basics/prep.html.
Nightingale, V. R., Sher, T. G., Mattson, M., Thilges, S., & Hansen, N. B. (2011, November 15). The effects of traumatic stressors and HIV-related trauma symptoms on health and health related quality of life. AIDS and Behavior, 15(8), 1870–1878. [Available at www.ncbi.nlm.nih.gov/pmc/ articles/PMC3629911].
Centers for Disease Control and Prevention. (2019, May 14 [updated]). HIV testing. HIV/AIDS. www.cdc.gov/hiv/testing/index.html.
Bebinger, M. (2019, March 21). Fentanyl-linked deaths: The U.S. opioid epidemic’s third wave. Kaiser Health News. www.khn.org/news/ fentanyl-linked-deaths-the-u-s-opioid-epidemics-third-wave.
The ARCH nurse program was developed in response to the considerable level of stigma and discrimination that women who inject drugs, particularly those who are pregnant and/or of child-bearing age, experience in the healthcare system. ARCH nurses counsel clients on reproductive health; conduct pregnancy, HIV and STD testing; offer adult vaccines; teach safer injection practices; provide wound care consultations; and arrange referrals for preconception, antenatal and HIV specialty care. New Jersey has expanded the number of ARCH nurses in the state; there are currently are 14 nurses at 13 sites, which include HRC locations and local health departments.
Primary Care Physician Training Opportunity: The Alzheimer’s and Dementia Care ECHO® Program By Morgan Daven
WHAT IS PROJECT ECHO®? Project ECHO® (Extension for Community Healthcare Outcomes) is a lifelong learning and guided practice model started in 2003 at the University of New Mexico School of Medicine that provides medical education, and increases workforce capacity to provide best-practice specialty care and reduce health disparities. The heart of the ECHO model is its hub-and-spoke knowledge-sharing networks, led by expert teams who use multi-point videoconferencing to conduct virtual clinics with community providers. Project ECHO aims to improve health outcomes while reducing geographic barriers and the cost of care through a teambased approach. Project ECHO initially started with a focus on hepatitis C, and has now expanded to more than 80 other complex diseases and conditions, including HIV, tuberculosis, chronic pain and behavioral health disorders. The Alzheimer’s Association is offering the ECHO Program for Alzheimer’s and dementia care to primary care physicians. The Alzheimer’s and Dementia Care ECHO® Program connects dementia care experts with healthcare teams from primary care practices, and emphasizes high-quality, person-centered care in community-based settings. This series from the Alzheimer’s Association is one of the first in the country focused on improving access to an accurate and timely diagnosis, and receiving quality dementia care in the primary care setting. The topics for this primary care series are based on Alzheimer’s Association dementia care guidance for healthcare professionals.
HOW DOES PROJECT ECHO® WORK? Project ECHO is a free telementoring program that uses videoconferencing technology to build workforce capacity and improve access to specialty care in local communities. The program creates an ongoing dialogue between dementia care experts and those on the front lines providing care to individuals living with Alzheimer’s and other dementias. Project ECHO provides not only an opportunity for dementia experts to share their insights but also a forum to explore real case studies from the field, to better address the common challenges facing communities providing dementia care. The benefits of participation include: •
Case-based learning so that all participants teach and learn
Video conferencing and other technology that fosters interactive learning
Easy access for joining a learning series.
HOW CAN PRIMARY CARE PHYSICIANS PARTICIPATE? The Alzheimer’s Association is now recruiting primary care physicians for the next session, which will start in late August 2019, and will continue to add subsequent series. During this six-month program, primary care providers participate for one hour every other week to discuss a real-life case, which provides the opportunity to gain knowledge, confidence and access to specialty consultation so that they can deliver excellent dementia care to patients in their own communities. For more information on Project ECHO or to learn how to participate, visit https://www.alz.org/professionals/ healthcare-professionals/echo-alzheimers-dementia-careprogram.
Morgan Daven is Senior Director, Health Systems, at the Alzheimer’s Association.
MDADVISOR | Summer 2019
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The Battle Within: Caring for Those with Dementia